Re: Daughter with CMT has opportunity to showcase CMT with science fair project

[Guest guest]

A voice additive to a universal remote that is connected to everything in the

home. Computer/lights/heat/door opener/door lock/mirowave/shower on off/phones,

etc.

>

> Hello,

>

> Our daughter age 12 has an opportunity to design a tool or device to assist

handicapped persons. This will be her Science fair project.

> She has CMT and would like take the opportunity to educate others about CMT.

>

> Her project could go on to a national level if it was good enough.

> If anyone has an idea that they would care to share we would really appreciate

the help.

>

> Thanks

> Tammy

>

[Guest guest]

Great idea! I was searching my brain to come up with something.

Jackie

Re: Daughter with CMT has opportunity to showcase CMT with

science fair project

A voice additive to a universal remote that is connected to everything in the

home. Computer/lights/heat/door opener/door lock/mirowave/shower on off/phones,

etc.

>

> Hello,

>

> Our daughter age 12 has an opportunity to design a tool or device to assist

handicapped persons. This will be her Science fair project.

> She has CMT and would like take the opportunity to educate others about CMT.

>

> Her project could go on to a national level if it was good enough.

> If anyone has an idea that they would care to share we would really appreciate

the help.

>

> Thanks

> Tammy

>

[Guest guest]

I saw a neat handle that was made to attach to a can of paint, quart size, so

the painter could put the hand through it...it made like a strap that crossed

the back of the hand vertically, and it was attached to the top and bottom of

the can...some rings that slipped over each end.

Anyway, made me think that I would like to have a koozie cup, those foam can

covers that keep cans cool longer. that had a handle similar to that, to just

slip my hand into, so I wouldn't worry so much about the lack of grip with my

thumb, which causes me to drop a soda can now and then. My son could use

something like that, too...he drinks out of the bottles because he can hold one

between his index and middle fingers, but a lot of soda gets wasted. It puts me

in the mind of the strap handles on the sides of the older video cameras.

Just a thought...perhaps not technical enough for a science fair.

Lee

tlee629@...

[Guest guest]

I have problem operating aerosol cans (deodrant, hair spray,..) and nail

clippers. For the aerosol can, I made a gadget that has a lever that is attached

to the can with pipe-grip. I operate by using my palm. Cost only a few dollars.

For the nail clipper, I clamp it down to a table with a lever. I am able to cut

my nails by pressing the lever with my arm.

Maybe your daugther and build something like these.

  

[Guest guest]

WOW....How creative!!!! I like both ideas but especially love the fingernail

one. This is so very practical and an issue we all probably run into. Okay,

I have to admit that sometimes my ego is in the room and I DO NOT like

asking for help. Takes from my independence, is what I tell myself anyway

Therefore, I really do not like to ask my wife or children, " can you

please cut my nails for me " ?? By attaching them to a table I can assist

myself and hold on to a level of dependence. Hmm, have you also found this

to work on toe nails. Sorry if TMI but just trying to picture trimming

toes nails with the clippers clamped to a table.

Now I do not want anyone stealing my millions but another thing we CMT

folks could use....along with those with arthritis, is a very large game

controller. My teenage boys are very much into Wii, XBox, and Playstation.

Before CMT I used to also like video games and sometimes I want to play with

them.....just to have a bonding moment. But because I have so much trouble

with the game controllers I just sit and watch. That tears me apart. It

would be nice to find a very hardware savy person to help develop a

controller that is CMT friendly.

RbQ

" Let Not The Ego Produce Evil "

http://www.charcot-marie-tooth.org/

From: [mailto: ] On Behalf Of

cipram1@...

Sent: Wednesday, October 13, 2010 9:20 AM

Subject: Re: Daughter with CMT has opportunity to showcase CMT with

science fair project

I have problem operating aerosol cans (deodrant, hair spray,..) and nail

clippers. For the aerosol can, I made a gadget that has a lever that is

attached to the can with pipe-grip. I operate by using my palm. Cost only a

few dollars. For the nail clipper, I clamp it down to a table with a lever.

I am able to cut my nails by pressing the lever with my arm.

Maybe your daugther and build something like these.

[Guest guest]

I have an idea, though not just for CMTers.  Being post-surgery (not CMT) and

having lots of joint deterioration issues (which are CMT related), I'm always

using ice for pain control.  However, the ice packs are too hard, so I use

frozen peas, but even the peas freeze together into a big block after having

been defrosted a couple of times.  The ice packs and the frozen peas are also a

problem because they are thick and bulky, very uncomfortable to lean against and

they don't conform easily to contoured shapes such as knees/ankles.  They are

also too cold to put directly on to the skin, so I have to find something, like

a thin shirt, to wrap them in.

 

How about an ice pack that isn't really ice, but made out of some other

cold-producing material?  Something as easy to use as a heating pad, but it's a

cold pad instead...thin, flexible, non-wet, non-bulky, not too cold, and

reusable.  I've seen something like this that the ER uses, but it's a one-time

thing.  They slap it and break something inside and it causes a chemical

reaction that makes it cold.  It lasts for an hour or so, but then it must be

thrown away.

 

Not sure if a reusable, home device like this is possible, but thought I'd throw

the idea out there just in case.

 

 

[Guest guest]

Rashid,

 

I have trouble with the controller too.  My hands can't hold it in place very

well, lots of slipping.  So I put little stick-on felt pads in strategic places

all around the controller, so it doesn't slip.   It's still a challenge, but

now much easier to hold.

 

I also use the thumbstick as a regular joystick with my fingers, since this

is easy than trying to use the thumb.  There are also larger, standard-size

joysticks that may work even better.  Here's an example...

 

http://www.amazon.com/Wii-Arcade-Stick-Nintendo/dp/B002OTAD1Q/ref=sr_1_1?ie=UTF8\

& qid=1287095404 & sr=8-1

 

    

From: Rashid_Comast <rashidbinquadir@...>

Subject: Re: Daughter with CMT has opportunity to showcase CMT with

science fair project

Date: Thursday, October 14, 2010, 1:13 AM

 

WOW....How creative!!!! I like both ideas but especially love the fingernail

one. This is so very practical and an issue we all probably run into. Okay,

I have to admit that sometimes my ego is in the room and I DO NOT like

asking for help. Takes from my independence, is what I tell myself anyway

Therefore, I really do not like to ask my wife or children, " can you

please cut my nails for me " ?? By attaching them to a table I can assist

myself and hold on to a level of dependence. Hmm, have you also found this

to work on toe nails. Sorry if TMI but just trying to picture trimming

toes nails with the clippers clamped to a table.

Now I do not want anyone stealing my millions but another thing we CMT

folks could use....along with those with arthritis, is a very large game

controller. My teenage boys are very much into Wii, XBox, and Playstation.

Before CMT I used to also like video games and sometimes I want to play with

them.....just to have a bonding moment. But because I have so much trouble

with the game controllers I just sit and watch. That tears me apart. It

would be nice to find a very hardware savy person to help develop a

controller that is CMT friendly.

RbQ

" Let Not The Ego Produce Evil "

http://www.charcot-marie-tooth.org/

From: [mailto: ] On Behalf Of

cipram1@...

Sent: Wednesday, October 13, 2010 9:20 AM

Subject: Re: Daughter with CMT has opportunity to showcase CMT with

science fair project

I have problem operating aerosol cans (deodrant, hair spray,..) and nail

clippers. For the aerosol can, I made a gadget that has a lever that is

attached to the can with pipe-grip. I operate by using my palm. Cost only a

few dollars. For the nail clipper, I clamp it down to a table with a lever.

I am able to cut my nails by pressing the lever with my arm.

Maybe your daugther and build something like these.

[Guest guest]

You might want to check out

http://www.icewraps.net/

~Heidi

From: [mailto: ] On Behalf Of

Sent: Thursday, October 14, 2010 3:26 PM

Subject: Re: Daughter with CMT has opportunity to showcase CMT with

science fair project

I have an idea, though not just for CMTers. Being post-surgery (not CMT)

and having lots of joint deterioration issues (which are CMT related), I'm

always using ice for pain control. However, the ice packs are too hard, so

I use frozen peas, but even the peas freeze together into a big block after

having been defrosted a couple of times. The ice packs and the frozen peas

are also a problem because they are thick and bulky, very uncomfortable to

lean against and they don't conform easily to contoured shapes such as

knees/ankles. They are also too cold to put directly on to the skin, so I

have to find something, like a thin shirt, to wrap them in.

How about an ice pack that isn't really ice, but made out of some other

cold-producing material? Something as easy to use as a heating pad, but

it's a cold pad instead...thin, flexible, non-wet, non-bulky, not too cold,

and reusable. I've seen something like this that the ER uses, but it's a

one-time thing. They slap it and break something inside and it causes a

chemical reaction that makes it cold. It lasts for an hour or so, but then

it must be thrown away.

Not sure if a reusable, home device like this is possible, but thought I'd

throw the idea out there just in case.

[Guest guest]

Thank you, Heidi.  These sound better than the gel packs I have currently. 

I'll give them a try.

 

For the science project...I was actually thinking of something that didn't

require a freezer.  I did a little digging and found what I had seen in the

ER.  It's an instant cold pack.

 

http://en.wikipedia.org/wiki/Instant_cold_pack

 

http://www.costco.com/Browse/Product.aspx?Prodid=11484576 & Ne=4000000 & eCat=BC%7C1\

11%7C22101 & N=4010170 & Mo=21 & No=5 & Nr=P_CatalogName:BC & cat=293 & Ns=P_Price%7C1%7C%7C\

P_SignDesc1 & lang=en-US & Sp=C

 

They require no refrigeration/freezing and are instantly cold when the chemical

reaction occurs.  They are very soft and lightweight.  However, after seeing

how they work, I'm not sure how it could be made reusable.  So probably not a

good idea after all. 

 

From: Heidi <williams-heidi@...>

Subject: Re: Daughter with CMT has opportunity to showcase CMT with

science fair project

Date: Thursday, October 14, 2010, 4:32 PM

 

You might want to check out

http://www.icewraps.net/

~Heidi

From: [mailto: ] On Behalf Of

Sent: Thursday, October 14, 2010 3:26 PM

Subject: Re: Daughter with CMT has opportunity to showcase CMT with

science fair project

I have an idea, though not just for CMTers. Being post-surgery (not CMT)

and having lots of joint deterioration issues (which are CMT related), I'm

always using ice for pain control. However, the ice packs are too hard, so

I use frozen peas, but even the peas freeze together into a big block after

having been defrosted a couple of times. The ice packs and the frozen peas

are also a problem because they are thick and bulky, very uncomfortable to

lean against and they don't conform easily to contoured shapes such as

knees/ankles. They are also too cold to put directly on to the skin, so I

have to find something, like a thin shirt, to wrap them in.

How about an ice pack that isn't really ice, but made out of some other

cold-producing material? Something as easy to use as a heating pad, but

it's a cold pad instead...thin, flexible, non-wet, non-bulky, not too cold,

and reusable. I've seen something like this that the ER uses, but it's a

one-time thing. They slap it and break something inside and it causes a

chemical reaction that makes it cold. It lasts for an hour or so, but then

it must be thrown away.

Not sure if a reusable, home device like this is possible, but thought I'd

throw the idea out there just in case.

[Guest guest]

Great idea.....but already exists. Any of the microwave heating packs that are

filled with a natural grain may also be placed in the freezer and used as an ice

pack. The most common one here in Canada is called Magic Bag and is available

in major drug and retail stores. http://www.cosysoles.ca/

From:

Sent: Thursday, October 14, 2010 6:26 PM

Subject: Re: Daughter with CMT has opportunity to showcase CMT with

science fair project

I have an idea, though not just for CMTers. Being post-surgery (not CMT) and

having lots of joint deterioration issues (which are CMT related), I'm always

using ice for pain control. However, the ice packs are too hard, so I use

frozen peas, but even the peas freeze together into a big block after having

been defrosted a couple of times. The ice packs and the frozen peas are also a

problem because they are thick and bulky, very uncomfortable to lean against and

they don't conform easily to contoured shapes such as knees/ankles. They are

also too cold to put directly on to the skin, so I have to find something, like

a thin shirt, to wrap them in.

How about an ice pack that isn't really ice, but made out of some other

cold-producing material? Something as easy to use as a heating pad, but it's a

cold pad instead...thin, flexible, non-wet, non-bulky, not too cold, and

reusable. I've seen something like this that the ER uses, but it's a one-time

thing. They slap it and break something inside and it causes a chemical

reaction that makes it cold. It lasts for an hour or so, but then it must be

thrown away.

Not sure if a reusable, home device like this is possible, but thought I'd throw

the idea out there just in case.

[Guest guest]

Thank you, .  I actually have one of these, some place.  I need to go

find it!  I received it as a gift many years ago.  I would put it in the

microwave to heat it up for my neck.  However, I had no idea that it could go

in the freezer and freeze in just 15 minutes!  Thanks for sharing!

 

For anyone interested...I also found it on Amazon...

http://www.amazon.com/MAGIC-BAG-Thermotherapeutic-pack-19X/dp/B000N0SPDG

 

 

From: <kotack@...>

Subject: Re: Daughter with CMT has opportunity to showcase CMT with

science fair project

Date: Friday, October 15, 2010, 7:10 AM

 

Great idea.....but already exists. Any of the microwave heating packs that are

filled with a natural grain may also be placed in the freezer and used as an ice

pack. The most common one here in Canada is called Magic Bag and is available in

major drug and retail stores. http://www.cosysoles.ca/

From:

Sent: Thursday, October 14, 2010 6:26 PM

Subject: Re: Daughter with CMT has opportunity to showcase CMT with

science fair project

I have an idea, though not just for CMTers. Being post-surgery (not CMT) and

having lots of joint deterioration issues (which are CMT related), I'm always

using ice for pain control. However, the ice packs are too hard, so I use frozen

peas, but even the peas freeze together into a big block after having been

defrosted a couple of times. The ice packs and the frozen peas are also a

problem because they are thick and bulky, very uncomfortable to lean against and

they don't conform easily to contoured shapes such as knees/ankles. They are

also too cold to put directly on to the skin, so I have to find something, like

a thin shirt, to wrap them in.

How about an ice pack that isn't really ice, but made out of some other

cold-producing material? Something as easy to use as a heating pad, but it's a

cold pad instead...thin, flexible, non-wet, non-bulky, not too cold, and

reusable. I've seen something like this that the ER uses, but it's a one-time

thing. They slap it and break something inside and it causes a chemical reaction

that makes it cold. It lasts for an hour or so, but then it must be thrown away.

Not sure if a reusable, home device like this is possible, but thought I'd throw

the idea out there just in case.