12th Aviation Battalion will be supporting this event. Blackhawk and Lakota
helicopters will be on display for the families to see and interact with. We
will also have emergency vehicles on display. Soldiers will be on-hand to give
our families the VIP treatment and answer questions about these incredible
machines!

Food, drinks and entertainment will be provided - you just have to show up!

All families who are interested in atte...nding are required to sign up and
provide the names of those attending. Because this event is being held on an
Army airfield, we must coordinate with security to allow access to non-military
families. Please R.S.V.P. to Christal Bardfield at TheBardfields@... by
August 8th. The earlier the better

We are looking forward to seeing all of our AMC families and friends!

DIRECTIONS
Airfield entrance is located at the intersection of Ehlers Road and Fairfax
County Parkway. For GPS purposes, the destination would be this intersection
with the city as Fort Belvoir and the state as Virginia.

You will turn at this intersection and follow the road to the airfield gate.
Here you will give the guard your name and let them know that you are attending
the AMC Meet-up at the Lakota Hangar. PLEASE ensure that ALL adults in your
party have a valid state or federal issued identification card (such as a
driver's license). Airfield access WILL BE DENIED if anyone lacks proper
identification.
From the gate you will stay straight on that road and follow the signs for the
meet-up.
We will have parking set up to accommodate wheelchairs.

For security purposes, please provide Christal with the make & model of your
vehicle as well as your license plate number. If you have a DOD sticker for your
vehicle there will be no need to provide this information.

If you have ANY questions about how to get here, please feel free to contact us
at TheBardfields@...

***UPDATE****   I wanted to send a message out to everyone who is attending, or
MIGHT be attending the meet-up. It is critical that you RSVP with the required
information by August 8th. Due to strict security on the airfield, we must have
the na...mes of everyone attending - both adults and children. I also need your
vehicle make, model, and plates. The only exception for vehicles is if you are
already military and have DOD stickers.

Unfortunately, anyone who is not on the guest list will be sent away at the
airfield gate. This is not something I will any control over, as access will be
granted only to those on the list by the gate guards. I certainly don't want to
see any of our wonderful families turned away :)

Thank you to everyone who has already provided me with this information. I hope
to hear from everyone else soon :) Thanks so much, and I can't wait to meet you
all. It is going to be a fantastic event!

Need help with Mandatory Medi-Cal Health Plan enrollment?
Free Enrollment Information & Assistance Event!
Starting this year, seniors and people with disabilities who have Medi-Cal but
not Medicare, and  who see their health care providers on a fee-for-service
basis will be required to enroll in a Medi-Cal Health Plan.
Join Us!  Get answers about deadlines for mandatory enrollment, coverage and
provider networks, and how to choose a Plan.  Learn how to ensure a smooth
transition.  Get help selecting the plan that best meets your needs.
Health Care Options staff will be available to help you enroll in a Plan, begin
an exception request, or answer your questions.  Assistance in Spanish and
English.
Come Prepared:  Bring your Medi-Cal card and your Medi-Cal Health Plan
Enrollment packet, if you have received it. Bring a list of the health care
providers that you currently see.
RSVP!   Please RSVP so we can be prepared to serve everyone. Call or email
Lauren at (510) 841-4776, lsteinberg@...
When
Thursday, August 11, 2011 from 1 – 4 p.m.
Where
Ed Roberts Campus, 3075 Adeline, Berkeley, Ca in the Osher Education Center
Additional Info:
Located at the Ashby BART.  Parking limited. Wheelchair accessible. Need
accommodations (Sign Language interpretation, assistive listening devices,
printed matter in alternative format, etc.)?  Call (510) 841-4776 or (510)
356-2662 (video phone) or TTY (510) 848-3101. We will try to accommodate all
requests, but need at least 3 business days notice.  Please do not wear scented
products.
Sponsors:  Community Resources for Independent Living, Senior Services Coalition
and Center for Independent Living

Hi everyone,
I'm on the city council board as an consultant to our mayor concerning disabled
person rights and were are trying to host a awareness day... but need help with
ideas...wanna share?

What area?   What city?

Activities
- Disablity simulation..  you can set up a "life's obsticals" course where you
try to
  > cross a street blindfolded.
  > navigate a normal kitech in a wheel chair
  > open a jar when your hands are disabled
  > tie your shoes when you can't bend your knees
  >  >> other suggestions folks?
- Contact groups in your area who provide 'Ability Aids' ..  I live in the
NorthEast.. and the folks at UNH   Northeast Passage (http://www.nepassage.org/)
have a lot of equipment to help disabled folks with sports and other
activities..  There must be groups like them in your area..  Such a group can
bring equipment used in sports and other adaptive technologies to let people see
and try them.
- Maybe Easter Seals and others in your area would also be willing to come and
display their information.
- How about building codes and other ADA information which could be displayed
and discussed.  Many of the ADA adaptations could help many people .. not just
the disabled.   I'll bet some of the building supply houses would be willing to
make displays of this stuff.


>>  Good luck with your event!!

>> Come on people..  Any other suggestions for our friend here?


Steve P

Good Luck!!

--- In amc_adults@yahoogroups.com, "rjross91" <rjross91@...> wrote:
>
> Hi everyone,
> I'm on the city council board as an consultant to our mayor concerning
disabled person rights and were are trying to host a awareness day... but need
help with ideas...wanna share?
>

adds walk down stairs that do not have a handrail when one cannot bend their
knees.

--- In amc_adults@yahoogroups.com, "SteveP" <spustell@...> wrote:
>
> What area?   What city?
>
> Activities
> - Disablity simulation..  you can set up a "life's obsticals" course where you
try to
>  > cross a street blindfolded.
>  > navigate a normal kitech in a wheel chair
>  > open a jar when your hands are disabled
>  > tie your shoes when you can't bend your knees
>  >  >> other suggestions folks?

CIL would like to pass this information on to the community, please see details
below:

San Francisco Care Congress

The San Francisco Care Congress will be held on August 20, 2011

12-5 Care Congress
5-8 pm Dinner and Caring Across Generations Cultural Event

10:30am: Hand in Hand Breakfast Care Congress Orientation
Are you a person with disabilities, a senior, family-member or ally who benefits
from the care of domestic workers? Please register for this orientation
breakfast!

Caring Across Generations is a bold new campaign for quality care and support,
and a dignified quality of life for all Americans, across generations. Care
Congresses are town-hall dialogues to bring together everyday people in a new
movement to create quality, dignified care for all.

Program to include:

* Sharing care stories: sharing testimonies and vision for change between
seniors, people with disabilities, family caregivers, home care workers,domestic
workers, children and families of care workers and people who need care;
* Giving voice to change: taking action together on important state and local
campaigns; and
* Growing a movement at home: Share the vision of transforming care in
America through a national campaign with state and local manifestations. Support
participants to build the Caring Across Generations movement in the Bay Area.

For more information contact Christina Olague, christina [at] sfsan.org or
(415)546 1333

This conference is fragrance-free. Please refrain from using perfumes, colognes,
or scented personal products in respect of people with chemical sensitivities.

Needs Assessment of Social Security Administration Beneficiaries with
Disabilities


University of California, San Francisco (UCSF)


Are you a person with a disability (including cognitive, hearing, vision, or
physical) who receives benefits from the Social Security Administration? 
Benefits can mean SSI, SSDI, or retirement.


If so, we'd like to talk with you!!


Researchers at the UCSF Disability Statistics Center want to know more about
your experience applying for Social Security benefits and your interactions with
the Social Security Administration.  We are conducting a needs assessment for
the Social Security Administration so that they can communicate better with
their beneficiaries who have disabilities.  Phone interviews will be
approximately a 30-45 minutes long.


For more information, or to participate, please call this toll-free number: 
1-855-209-9538

Please speak clearly and slowly to leave your name and number.  A UCSF
researcher (Mel) will get back in touch with you to tell you more about this
study.

Or you can email:

alice.wong2@...
Alice Wong, Staff Research Associate II
UCSF Disability Statistics Center

Gettin' Down in OakTown!

Help us create a home grown disability activist community in Oakland…

What: A kick-off meeting (with pizza) to share ideas and dreams and create
schemes for the future

Where: 1904 Franklin St, Oakland 3rd Floor
When: Aug 26th 11am-1pm

Who: You! These meeting are open to all people with disabilities and our allies
who want create change in the world!

To RSVP Contact Lauren: 510-841-4776 or lsteinberg@...

All CIL Meetings are conducted in wheelchair-accessible locations.   Please do
not wear scented products to this meeting.

If you need accommodations such as Sign Language interpretation, assistive
listening devices, printed matter in alternative format, please call (510)
841-4776 or (510) 356-2662 (video phone) or TTY (510) 848-3101.  We will try to
accommodate all requests, but need at least 3 business days notice.

Upcoming AMC meet ups

September 17 -  Stow, OH
10:00am - 4:00pm
S.O.A.R Boundless Playground-Oak Tree Shelter-Silver Springs Park
5027 Stow Road

Subs will be provided!

PLEASE RSVP by Sept 10th w/ number of people attending to traceyschalk@...

This meet-up is being held in a shelter next to a boundless playground.

FB Event Invite :  https://www.facebook.com/event.php?eid=129483673811986

October 1st - Swansea, MA
12:00pm - 5:00pm

Simcock Farms
361 Marvel Street

AMCers are free non AMCers (adults and siblings $5)
This includes pumpkin picking, food for the petting zoo, hay rides & Homemade
ice cream.
A light lunch will be provided.


FB Event Invite :  https://www.facebook.com/event.php?eid=223810507658300

October 1st - Greenville, SC
11am-4pm
Boundless Playground
4806 Old Spartanburg Rd
Taylors, SC
Hot dogs and drinks will be provided.

RSVP by September 10th - ani@...

FB Event Invite https://www.facebook.com/event.php?eid=182193238518105
Flyer :  https://acrobat.com/app.html#d=3EAGL3KGB1Mto1hWyFqx4A

Gettin' Down in OakTown!

Help us create a home grown disability activist community in Oakland…

What: A kick-off meeting (with pizza) to share ideas and dreams and create
schemes for the future

Where: Downtown Oakland CIL Office
             1904 Franklin St, Oakland 3rd Floor
When: Aug 26th 4-6pm

Who: You! These meeting are open to all people with disabilities and our allies
who want create change in the world!

To RSVP Contact Lauren: 510-841-4776 or lsteinberg@...

All CIL Meetings are conducted in wheelchair-accessible locations.   Please do
not wear scented products to this meeting.

If you need accommodations such as Sign Language interpretation, assistive
listening devices, printed matter in alternative format, please call (510)
841-4776 or (510) 356-2662 (video phone) or TTY (510) 848-3101.  We will try to
accommodate all requests, but need at least 3 business days notice.

hey everybody. i just joined the group

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

Hi all.

I really enjoy handcycling.. (don't do it enough with family and job and all)
but it is an excelent sports option for me.   This might be new news to some,
but for others there might be better types of sports and exercise.   So i
thought why not put up a common photo album where we can all add pictures and
ideas of what we like to do for sports.   You might do something others haven't
thought of.. and this would a good way to share our accomplishments, and our
good ideas.

I hope you all post lots of pictures in the album and get lots of ideas from it.

My first picture is my wife and i in the rain.   We have rigged a foot powered
trike onto the back of my hand cycle to get a tandem, and have started to do
long distance riding together.    The longest we have done is a 50 mile ride
when this picture was taken.  Next weekend we will be doing a 100 mile ride in
the White Mountains of NH..  see http://threenotchcentury.org/ for the details.

I hope you like my idea.   I am looking forward to seeing yours!

Have a Great day.

Steve P

Hi all.

I really enjoy handcycling.. (don't do it enough with family and job and all)
but it is an excelent sports option for me.   This might be new news to some,
but for others there might be better types of sports and exercise.   So i
thought why not put up a common photo album where we can all add pictures and
ideas of what we like to do for sports.   You might do something others haven't
thought of.. and this would a good way to share our accomplishments, and our
good ideas.

I hope you all post lots of pictures in the album and get lots of ideas from it.

My first picture is my wife and i in the rain.   We have rigged a foot powered
trike onto the back of my hand cycle to get a tandem, and have started to do
long distance riding together.    The longest we have done is a 50 mile ride
when this picture was taken.  Next weekend we will be doing a 100 mile ride in
the White Mountains of NH..  see http://threenotchcentury.org/ for the details.

I hope you like my idea.   I am looking forward to seeing yours!

Have a Great day.

Steve P

You go Steve! Good job.
 
Tracy 
tau


First they ignore you.
Then they laugh at you.
Then they fight you.
Then you win.

~ Mahatma Gandhi

"It's hard to beat a person who never gives up.”
- Babe Ruth






>________________________________
>From: SteveP <spustell@...>
>To: amc_adults@yahoogroups.com
>Sent: Saturday, September 3, 2011 11:02 AM
>Subject: [Adults AMC] New Photo album added  -- Sports
>
>
> 
>Hi all.
>
>I really enjoy handcycling.. (don't do it enough with family and job and all)
but it is an excelent sports option for me.   This might be new news to some,
but for others there might be better types of sports and exercise.   So i
thought why not put up a common photo album where we can all add pictures and
ideas of what we like to do for sports.   You might do something others haven't
thought of.. and this would a good way to share our accomplishments, and our
good ideas.
>
>I hope you all post lots of pictures in the album and get lots of ideas from
it.
>
>My first picture is my wife and i in the rain.   We have rigged a foot powered
trike onto the back of my hand cycle to get a tandem, and have started to do
long distance riding together.    The longest we have done is a 50 mile ride
when this picture was taken.  Next weekend we will be doing a 100 mile ride in
the White Mountains of NH..  see http://threenotchcentury.org/ for the details.
>
>I hope you like my idea.   I am looking forward to seeing yours!
>
>Have a Great day.
>
>Steve P
>
>
>
>
>

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

Handcycling is awesome. Here at the University of Arizona we justnstarted the
first coliagate team for handcycling. For those of you looking for grants to
help with buying a bike check into Challenged Athletes Foundation. They help
with different disabled sport equipment!  Great photos Steve!

Peter Hughes


Sent from my iPad

On Sep 3, 2011, at 8:02 AM, "SteveP" <spustell@...> wrote:

> Hi all.
>
> I really enjoy handcycling.. (don't do it enough with family and job and all)
but it is an excelent sports option for me. This might be new news to some, but
for others there might be better types of sports and exercise. So i thought why
not put up a common photo album where we can all add pictures and ideas of what
we like to do for sports. You might do something others haven't thought of.. and
this would a good way to share our accomplishments, and our good ideas.
>
> I hope you all post lots of pictures in the album and get lots of ideas from
it.
>
> My first picture is my wife and i in the rain. We have rigged a foot powered
trike onto the back of my hand cycle to get a tandem, and have started to do
long distance riding together. The longest we have done is a 50 mile ride when
this picture was taken. Next weekend we will be doing a 100 mile ride in the
White Mountains of NH.. see http://threenotchcentury.org/ for the details.
>
> I hope you like my idea. I am looking forward to seeing yours!
>
> Have a Great day.
>
> Steve P
>
>


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

My fiancee has AMC on all 4 limbs.
I love him dearly and will do all I can to help him but lately I am not sure if
he is getting worse or if he is starting to take the easy way out of things.
He used to walk alot the first few years we were together,he has molded braces
and special canes, he used to go along daily on his own in places where he
cannot get his power chair, but lately he just asks me to carry him, I am happy
to give assistance to my honey but while he used to ask me a couple times a
week, it is now several times a day. I worry he is going to lose even more mass
if he does not at least try to move about, he said that cannot happen but I
still worry.
I am going to be getting a knee surgury the end of this month to try to gain
mobiility and ease pain. and I will not be able to carry him for at least a
month, he wants me to put off surgury but I really cannot handle the pain any
longer (was in a hit and run and my knee took the force).
am I being selfish by wanting to get my surgury when he needs me to carry him?I
have to take a huge dose of meds after I carry him as the pain is so horrible
after lifting the extra weight that I want to just cry. He gets so upset with me
the times I tell him I just cannot carry him today as I really cant even walk
myself.
I know I am whining,but I need another perspective and you all seem to be really
caring, I am at my wits end with guilt over scheduling my surgury.
Should he be walking on his own if he can? I know he would be so very mad at me
for asking others for suggestions but I am feeling alone here.

Hi there, how old is your fiancé?  Is it really not appropriate for you to
be carrying him.  How old is he, and when you say carry what exactly is that
entailing?  You need to look after yourself first before you can assist hi,
otherwise if your health and mobility fails then you wont be able to help
him at times.  That is the key helping at times not all the time.  He needs
to go to his doctor along with you and talk about his struggles and changing
ability to see what can be in place.  Perhaps he needs to be referred to
physio to see what can be done?  Perhaps a different power chair or scooter
that would be easier for mobility.



I have AMC and work in the field of recreation supporting people with
disabilities.  When I work with families of children who have disabilities
or adults with a disability, I always say put the supports in place to have
a quality of life.  In fact he is not doing this he is relying on you
instead of looking at how he needs to put the supports in place, I always
say “it is your disability, you take responsibility for it”  this does not
mean others don’t support or assist but it should not be to the extent you
have described especially with your impending surgery, which by the way do
not put off....like I said take care of you so you can take care of him at
times when needed.



Sounds like he is not willing to accept the changes his body is going
through.  It is not easy to acknowledge you are declining, changing etc, I
am going through the same thing and have had to endure a huge shift in my
life from compete independence to attendant care, and it is not easy to get
to the place of admitting.  However mine was a safety issue and health issue
so I could not ignore it and it sounds like these could be the same issues
for different reasons with your fiancé.



Be firm not stern and suggest the first step getting an assessment if you
have not done so already.  Again be firm have the surgery, he is probably
worried you having the surgery means you won’t be available to carry him,
and that is not fair to you!!



Patty.



From: amc_adults@yahoogroups.com [mailto:amc_adults@yahoogroups.com] On
Behalf Of zhinka aka otter_woman
Sent: September-04-11 11:07 AM
To: amc_adults@yahoogroups.com
Subject: [Adults AMC] not sure if anyone remembers me?





My fiancee has AMC on all 4 limbs.
I love him dearly and will do all I can to help him but lately I am not sure
if he is getting worse or if he is starting to take the easy way out of
things.
He used to walk alot the first few years we were together,he has molded
braces and special canes, he used to go along daily on his own in places
where he cannot get his power chair, but lately he just asks me to carry
him, I am happy to give assistance to my honey but while he used to ask me a
couple times a week, it is now several times a day. I worry he is going to
lose even more mass if he does not at least try to move about, he said that
cannot happen but I still worry.
I am going to be getting a knee surgury the end of this month to try to gain
mobiility and ease pain. and I will not be able to carry him for at least a
month, he wants me to put off surgury but I really cannot handle the pain
any longer (was in a hit and run and my knee took the force).
am I being selfish by wanting to get my surgury when he needs me to carry
him?I have to take a huge dose of meds after I carry him as the pain is so
horrible after lifting the extra weight that I want to just cry. He gets so
upset with me the times I tell him I just cannot carry him today as I really
cant even walk myself.
I know I am whining,but I need another perspective and you all seem to be
really caring, I am at my wits end with guilt over scheduling my surgury.
Should he be walking on his own if he can? I know he would be so very mad at
me for asking others for suggestions but I am feeling alone here.





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

He just turned 50,mostly I basically front carry him with his legs over one arm
with my other arm wrapped around him. I dont mind the assist getting him from
bed to chair as its limited full body weight carry.
He is really thin but even 100 lbs gets heavy as we get older.
His doc did suggest a mobility therapist,not sure what that is?
I will suggest an assessment the next doctor visit.I think he should have gone
sooner to doc,but the past couple years he is putting them off until last
moment, I think he worries about what docs will say/

I like your saying,sometimes I do want to say it is not my fault you have this
disibilty and I hate feeling guilty sometimes that I can do things he cannot. I
know he is upset that I have gone back to riding horse,I know he would like to
come with but his hips dont have the flexibility to let him ride,the selfish
part of me does totally cherish my rides in that I can just gallop along on my
old horse and pretend I dont have a care in the world. My horse and I have been
together for 21 years now, and u know how horses are the best listeners lol.
dang I do have guilt issues dont I?
Typing this stuff out is very theraputic,it is like wow, when I read it I can
see areas where I need to improve and areas where I really am letting myself be
used. ok I will quit rambling now,I think i need to go back keeping a journal
thank you for your suggestions! I feel so much better, hope I didnt take up too
much of everyones time!
zhinka

Zhinka ..  I am in full agreement with Patty Clarke’s posting.



Do NOT hurt yourself to help your fiancée..    In the best of lights you
need to protect what you have so you can continue to help into the future.



I also like Patty’s idea to have your fiancée get an evaluation.    This is
a very good approach, so it can be clearly identified what he can and
cannot do.



To the best of my knowledge, AMC is not degenerative..  but aging is.   And
since we start with less, we lose what we have faster.    Urge your fiancée
to get out there and use what he has to keep it as long as he can, the same
as any able bodied person has to do.



If he is not open to these suggestions..  I suggest you consider another
relationship.  You do not want to be codependent and in an abusive
situation..   Anyone who is urging you to delay necessary surgery for their
benefit is getting close to being abusive, at least taking you for granted
and selfishly putting their needs ahead of yours.



I try to be pretty mobile.. but there are places I cannot go,  things I
cannot do.   And so I don’t do them.   I realize every case is different,
but I suspect he needs to get a reality check on his needs and your ability
to meet them.    More help or a change in approach may be needed.





Good Luck with your surgery!!  I hope you recover completely and quickly.







Steve P





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

You are doing well Zhinka.

I am 57, been married 33 years.. and my wife is wonderful.. but there are things
she can do.. things that she can enjoy that i cannot, and I encourage her to do
them without distress.

Note: This is the natural way of relationships even if no disablity is involved.
It is just the give and take of two indiviuals finding a way to remain
individuals, and still be one.

   I try to enjoy what i can.. and enjoy seeing her enjoy herself.    I know she
has quitely curtailed some activities she likes because she would rather share
them, then do them alone. ..  but we keep looking for bridges to the things she
loves.. because she loves them, and i love her.   Likewise there are some things
i enjoy which she doesn't ..  some i keep doing, and some i have curtailed.

For example, in the no-AMC-disablity-involved category, she loves to play the
handbells..  i really don't enjoy them.. so even though i could play them,  i am
happy to enjoy watching her, and encourage her all i can.

She loves Mountain climbing and did a lot of it before we met.   But since this
is one thing i can't do, she enjoys it less often than before, but still goes
now and then, and takes the kids to the woods.    I am the cheerleader, but
mostly I sit that out.

I have several friends who love horses.  I gather that they would not be able to
give up their relationship with their horses.. and one who loves them would be
unlikely to ask (shame on them if they do).   So I say to 'Ride Girl,  Ride'.

Good luck to you both.   Take care of each other.. and take care of yourself
individually as well.

Steve P



--- In amc_adults@yahoogroups.com, "zhinka aka otter_woman" <otter_woman@...>
wrote:
>
>
> He just turned 50,mostly I basically front carry him with his legs over one
arm with my other arm wrapped around him. I dont mind the assist getting him
from bed to chair as its limited full body weight carry.
> He is really thin but even 100 lbs gets heavy as we get older.
> His doc did suggest a mobility therapist,not sure what that is?
> I will suggest an assessment the next doctor visit.I think he should have gone
sooner to doc,but the past couple years he is putting them off until last
moment, I think he worries about what docs will say/
>
> I like your saying,sometimes I do want to say it is not my fault you have this
disibilty and I hate feeling guilty sometimes that I can do things he cannot. I
know he is upset that I have gone back to riding horse,I know he would like to
come with but his hips dont have the flexibility to let him ride,the selfish
part of me does totally cherish my rides in that I can just gallop along on my
old horse and pretend I dont have a care in the world. My horse and I have been
together for 21 years now, and u know how horses are the best listeners lol.
dang I do have guilt issues dont I?
> Typing this stuff out is very theraputic,it is like wow, when I read it I can
see areas where I need to improve and areas where I really am letting myself be
used. ok I will quit rambling now,I think i need to go back keeping a journal
> thank you for your suggestions! I feel so much better, hope I didnt take up
too much of everyones time!
> zhinka
>

Your Rights in a Bag…

Tools to be a stronger self advocate

Resources for the Big Bad World…learn about what's available from the UC
Berkeley Disabled Student Residence Program, the Center for Independent Living,
In Home Support Services, and beyond!

Fri Sept 9th 12-1pm
Unit 1 Dorms, Cheney Hall
Durant and College Ave, Berkeley

For more information call Lauren Steinberg at CIL
510-841-4776 ex 3147 or lsteinberg@...

All CIL Meetings are conducted in wheelchair-accessible locations. Please do
not wear scented products to this meeting.

If you need accommodations such as Sign Language interpretation, assistive
listening devices, printed matter in alternative format, please call (510)
841-4776 or (510) 356-2662 (video phone) or TTY (510) 848-3101. We will try to
accommodate all requests, but need at least 3 business days notice.

Peter Hughes


Sent from my iPad

On Sep 5, 2011, at 10:44 AM, "Steve Pustell" <spustell@...> wrote:

> Zhinka .. I am in full agreement with Patty Clarke’s posting.
>
> Do NOT hurt yourself to help your fiancée.. In the best of lights you
> need to protect what you have so you can continue to help into the future.
>
> I also like Patty’s idea to have your fiancée get an evaluation. This is
> a very good approach, so it can be clearly identified what he can and
> cannot do.
>
> To the best of my knowledge, AMC is not degenerative.. but aging is. And
> since we start with less, we lose what we have faster. Urge your fiancée
> to get out there and use what he has to keep it as long as he can, the same
> as any able bodied person has to do.
>
> If he is not open to these suggestions.. I suggest you consider another
> relationship. You do not want to be codependent and in an abusive
> situation.. Anyone who is urging you to delay necessary surgery for their
> benefit is getting close to being abusive, at least taking you for granted
> and selfishly putting their needs ahead of yours.
>
> I try to be pretty mobile.. but there are places I cannot go, things I
> cannot do. And so I don’t do them. I realize every case is different,
> but I suspect he needs to get a reality check on his needs and your ability
> to meet them. More help or a change in approach may be needed.
>
> Good Luck with your surgery!! I hope you recover completely and quickly.
>
> Steve P
>
> [Non-text portions of this message have been removed]
>
>


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

As we get older we are going to have more issues. Cant hurt our partners in the
process. There is technology out there to help keep independence and to relieve
helpers of physical strain. Take a look at the sure hands lift systems.  My wife
wont even get me a beer so i guess im walkinng a little longer.

Peter Hughes


Sent from my iPad

On Sep 7, 2011, at 9:29 AM, Pete <coachhughes50@...> wrote:

>
>
> Peter Hughes
>
> Sent from my iPad
>
> On Sep 5, 2011, at 10:44 AM, "Steve Pustell" <spustell@...> wrote:
>
> > Zhinka .. I am in full agreement with Patty Clarke’s posting.
> >
> > Do NOT hurt yourself to help your fiancée.. In the best of lights you
> > need to protect what you have so you can continue to help into the future.
> >
> > I also like Patty’s idea to have your fiancée get an evaluation. This is
> > a very good approach, so it can be clearly identified what he can and
> > cannot do.
> >
> > To the best of my knowledge, AMC is not degenerative.. but aging is. And
> > since we start with less, we lose what we have faster. Urge your fiancée
> > to get out there and use what he has to keep it as long as he can, the same
> > as any able bodied person has to do.
> >
> > If he is not open to these suggestions.. I suggest you consider another
> > relationship. You do not want to be codependent and in an abusive
> > situation.. Anyone who is urging you to delay necessary surgery for their
> > benefit is getting close to being abusive, at least taking you for granted
> > and selfishly putting their needs ahead of yours.
> >
> > I try to be pretty mobile.. but there are places I cannot go, things I
> > cannot do. And so I don’t do them. I realize every case is different,
> > but I suspect he needs to get a reality check on his needs and your ability
> > to meet them. More help or a change in approach may be needed.
> >
> > Good Luck with your surgery!! I hope you recover completely and quickly.
> >
> > Steve P
> >
> > [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]

If you'd like to BART over with a group of folks meet in the lobby of the Ed
Roberts Campus (ERC) at 11am on Wed 9/21. The ERC is located at 3075 Adeline St,
Berkeley and sits on top of the Ashby BART. Please call/email Lauren to RSVP or
with questions - 510-841-4776.


*MY MEDICAID MATTERS!*
*RALLY IN SAN FRANCISCO*
*Wednesday, September 21 at Noon*
*Civic Center Plaza*

Medicaid (Medi-Cal in California) is being considered for substantial cuts by
Congress and the Super Committee.
On September 21 more than 1,000 people with disabilities will gather in
WASHINGTON, DC to say NO to these cuts!
Show the country that people from coast-to-coast are saying

*MY MEDICAID MATTERS!*

*Sponsored by: *Independent Living Resource Center SF

*Co-sponsors include:*
Community Resources for Independent Living, Hayward
Marin Center for Independent Living
California Partnership
Health Access
Californians United in Defense of Olmstead
Gray Panthers
CA Alliance for Retired Americans
CA Domestic Workers Coalition
Jobs with Justice
Planning for Elders
Senior Action Network

For more information contact Derek at ILRCSF, 415-543-6222

My Medicaid Matters!
Pre-Rally Poster Making Pizza Party!

Please join us for a fun filled poster making palooza:

Time: 4 – 6pm
Date: Mon 9/19/2011

Location:
Ed Roberts Campus  3075 Adeline St, Berkeley
At the Ashby BART

Contact Lauren to RSVP
510-841-4776 or lsteinberg@...

All CIL Meetings are conducted in wheelchair-accessible locations.   Please do
not wear scented products to this meeting.
If you need accommodations such as Sign Language interpretation, assistive
listening devices, printed matter in alternative format, please call (510)
841-4776 or (510) 356-2662 (video phone) or TTY (510) 848-3101.  We will try to
accommodate all requests, but need at least 3 business days notice.

Own Your History!

Join us for CIL's kickoff celebration of Disability History Week!


Friday, October 14th 5:00pm - 7:00pm
Ed Roberts Campus (at the Ashby BART)
3075 Adeline St, Berkeley

Food, Disability History Trivia games, and FUN for all!

Sen Loni Hancock and Teresa Favuzzi, the Executive Director of the California
Foundation for Independent Living Centers, will give Youth a dynamic new view on
what it is to learn and live DISABILITY HISTORY

Contact Lauren for more info or to RSVP
510-841-4776 or lsteinberg@...

Disability History Week has been declared for the 2nd week of October!

All CIL Meetings are conducted in wheelchair-accessible locations. Please do not
wear scented products to this meeting.   If you need accommodations such as Sign
Language interpretation, assistive listening devices, printed matter in
alternative format, please call (510) 841-4776 or (510) 356-2662 (video phone)
or TTY (510) 848-3101. We will try to accommodate all requests, but need at
least 3 business days notice.

hello. I do not have arthro but son does. He is now going to be 11 and I am
looking for a good place for him to go where he can learn what amc is all about
on a level that is his own. Is there anyone that may know of anywhere or anyone
that would be willing to "mentor" to this? We have done fairly well with this
but now hes getting older and there are some things he may need advice on. We
also are starting to encounter bullying by kids that are starting new to the
school district. So as I said, any advice or links that may help him would be
greatly appreciated!!

                                                                     Sincerely,
                                                               Paula B

Own Your History!

Join us for CIL's kickoff celebration of Disability History Week!


Friday, October 14th 5:00pm - 7:00pm
Ed Roberts Campus (at the Ashby BART)
3075 Adeline St, Berkeley

Food, Disability History Trivia games, and FUN for all!

Sen Loni Hancock and Teresa Favuzzi, the Executive Director of the California
Foundation for Independent Living Centers, will give Youth a dynamic new view on
what it is to learn and live DISABILITY HISTORY

Contact Lauren for more info or to RSVP
510-841-4776 or lsteinberg@...

Disability History Week has been declared for the 2nd week of October!

All CIL Meetings are conducted in wheelchair-accessible locations. Please do not
wear scented products to this meeting.   If you need accommodations such as Sign
Language interpretation, assistive listening devices, printed matter in
alternative format, please call (510) 841-4776 or (510) 356-2662 (video phone)
or TTY (510) 848-3101. We will try to accommodate all requests, but need at
least 3 business days notice.

***PLEASE NOTE - The Civic Center elevator has been out of order recently.
According to the BART Service Advisory Page
(www.bart.gov/schedules/advisories/index.aspx) the Civic Center elevator is
working again as of today (Tues 9/20 10:48am). If it is not working tomorrow,
though, take MUNI to the Van Ness stop.***

If you'd like to BART over with a group of folks meet in the lobby of the Ed
Roberts Campus (ERC) at 11am on Wed 9/21. The ERC is located at 3075 Adeline St,
Berkeley and sits on top of the Ashby BART. Please call/email Lauren to RSVP or
with questions - 510-841-4776.

MY MEDICAID MATTERS!
RALLY IN SAN FRANCISCO
Wednesday, September 21 at Noon
Civic Center Plaza

Medicaid (Medi-Cal in California) is being considered for substantial cuts by
Congress and the Super Committee.
On September 21 more than 1,000 people with disabilities will gather in
WASHINGTON, DC to say NO to these cuts!

Show the country that people from coast-to-coast are saying
MY MEDICAID MATTERS!

Sponsored by: Independent Living Resource Center SF
Co-sponsors include:
Community Resources for Independent Living, Hayward
Marin Center for Independent Living
Silicon Valley Independent Living Center, San Jose
Center for Independence of Individuals with Disabilities, San Mateo
Berkeley Center for Independent Living
California Partnership
Health Access
Communities United in Defense of Olmstead (CUIDO)
Gray Panthers
CA Alliance for Retired Americans
CA Domestic Workers Coalition
Jobs with Justice
Planning for Elders
Senior Action Network

For more information contact Derek at ILRCSF, 415-543-6222

All CIL Meetings are conducted in wheelchair-accessible locations.   Please do
not wear scented products to this meeting.
If you need accommodations such as Sign Language interpretation, assistive
listening devices, printed matter in alternative format, please call (510)
841-4776 or (510) 356-2662 (video phone) or TTY (510) 848-3101.  We will try to
accommodate all requests, but need at least 3 business days notice.

Paula B. Sounds to me like the school your son is going to needs mentoring and
disabled awareness.  Where do you live?  Although I have Arthrogryposis I run
the community outreach program for the Spinal Cord Injury Support group of
Arizona and we have a peer mentoring program your son and your family could
speak with, although not exactly the same at least some of the topics we cover
will be similiar. We go out and speak to schools and do presentations, Surely
there is some organization similiar in your state that does the same?  Sometimes
our group doesn't reach the bullies but reaches the surrounding students and
they tell the bullies to cut it out.
Advise for your son that I would give him after being called every name in the
book (Cripple, Gimp, Walking Tree, Peg leg Pete, Stick, Crutch to name just a
few) over my years is to never take what these kids are saying about you
seriously.  I have found that bullys are trying to overlook their own issues. 
We need to attempt to develop thick skin and realize personal self esteem is far
more important then what others think say or do.  Bullying of any type should be
brought to the attention of the school administration and keep a good record of
the incidences.  I taught Adaptive PE for years in Middle school and would
advise this to all of my student's parents.   It is a very serious problem
especially with the social networking we now have so we need to take it very
seriously.

Peter Hughes

  To: amc_adults@yahoogroups.com
From: no_reply@yahoogroups.com
Date: Thu, 6 Oct 2011 21:54:32 +0000
Subject: [Adults AMC] advice from anywhere




























       hello. I do not have arthro but son does. He is now going to be 11 and I
am looking for a good place for him to go where he can learn what amc is all
about on a level that is his own. Is there anyone that may know of anywhere or
anyone that would be willing to "mentor" to this? We have done fairly well with
this but now hes getting older and there are some things he may need advice on.
We also are starting to encounter bullying by kids that are starting new to the
school district. So as I said, any advice or links that may help him would be
greatly appreciated!!



                                                                     Sincerely,

                                                               Paula B


















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