RE: Very sore.........../Grace\Cindy H

August 21, 2004

In a message dated 8/21/2004 3:09:16 PM Pacific Standard Time,

bfhalkett@... writes:

At what point do you think the silver

ring splints should be used. I suspect I should be getting the thumb

one for her now as the major tendon in her thumbs slide across the bone

in a strange way and her thumb can drop down unnaturally. Do the ring

splints help this as I don't think she would put up with a thumb splint,

support at this time.

The ring splints are helping my daughter hold a pencil and write properly and

with less fatigue. However, I have a permanently dislocated right thumb and

got the thumb shield style.....I'm finding it too restrictive overall for many

daily activities! If a certain splint will help relieve pain from improper

use of a joint, I'd think that would be a great time to try it!

Liza

August 21, 2004

In a message dated 8/21/2004 3:09:16 PM Pacific Standard Time,

bfhalkett@... writes:

At what point do you think the silver

ring splints should be used. I suspect I should be getting the thumb

one for her now as the major tendon in her thumbs slide across the bone

in a strange way and her thumb can drop down unnaturally. Do the ring

splints help this as I don't think she would put up with a thumb splint,

support at this time.

The ring splints are helping my daughter hold a pencil and write properly and

with less fatigue. However, I have a permanently dislocated right thumb and

got the thumb shield style.....I'm finding it too restrictive overall for many

daily activities! If a certain splint will help relieve pain from improper

use of a joint, I'd think that would be a great time to try it!

Liza

August 21, 2004

Hi Cindy H.

Yes! That is my big beef.....that drs pass off the wrist, finger joint

problems.....and shoulder probs....and have no clue as to good support

devices. I'm suggesting a crash course. My dtr.is not yet popping the

finger joints to relieve pain. At what point do you think the silver

ring splints should be used. I suspect I should be getting the thumb

one for her now as the major tendon in her thumbs slide across the bone

in a strange way and her thumb can drop down unnaturally. Do the ring

splints help this as I don't think she would put up with a thumb splint,

support at this time.

I also sent off an e-mail to NIA/NIH to enrol Meaghan in the study

despite her already having seen a geneticist here. Getting this

comprehensive work-up has got to be of benefit, particularly as she may

require financial disability support when we know it progresses. Now I

have to find a charitable foundation in Canada that would cover the

flight costs. More searching. Never ends!

Bernie

Re: Very sore.........../Grace

Hi Grace,

You should probably get your shoulder looked at to be sure it's not

sitting out of joint, or partially out of joint.

Especially with all the pain you're having in that area.

And no, you're not the only with the problems re: deod and long

hair....

that's why I have short hair so it can air dry, or be blown dry in a

very short time.

I've usually been able to hold my shoulder up long enough to get the

doed. on, or if I can't get the left arm over enough to put it under

the right arm, I use the right hand--pays to have a little extra

flexibility doing that.

Used to be a time aching fingers could get relief from being popped, but

no more. Now they're really stiff and painful and also the joints are

swollen when I get up, or don't use them for a while. (arthrosis/

arthritis)

if I'd used silver ring splints and assistive devises years earlier it

would have helped to lessen the severity of some of this.

Also my hand and finger joints have loosened up a good deal more over

the years.

I hope you'll be able to get into the study at NIH. It would help your

doctors understand the importance of doing things now-not wait until

your joints are shot to start....like mine did.

The last two years I've had new doctors--that's why so many things are

being taken care of now. They were ignored for YEARS! So the damage is

far greater.

good luck on getting accepted!

Love,

Cindyh

wisc

~~

From: Grace

For the last 3 weeks my shoulder has been hurting.

August 21, 2004

Bernie, I do think the ring splints would probably help her a lot.

I use them, and they have really helped me. You need to have

someone measure her for them though, as there is a certain way to

measure. I have all the contact info for the company if you would

like me to send it to you. Let me know, OK?

Love Lana

> Hi Cindy H.

> Yes! That is my big beef.....that drs pass off the wrist, finger

joint

> problems.....and shoulder probs....and have no clue as to good

support

> devices. I'm suggesting a crash course. My dtr.is not yet popping

the

> finger joints to relieve pain. At what point do you think the

silver

> ring splints should be used. I suspect I should be getting the

thumb

> one for her now as the major tendon in her thumbs slide across the

bone

> in a strange way and her thumb can drop down unnaturally. Do the

ring

> splints help this as I don't think she would put up with a thumb

splint,

> support at this time.

August 21, 2004

How do you apply to NIH ? me, my husband and both my kids have type 3

Thanks

Autumn

_____

From: cindy clark

Sent: Saturday, August 21, 2004 7:30 PM

To: ceda

Subject: Re: Very sore.........../Grace\Cindy H

From: Bernadette

......I also sent off an e-mail to NIA/NIH to enrol Meaghan in the study

despite her already having seen a geneticist here. Getting this

comprehensive work-up has got to be of benefit,... Bernie

************************************

I'm so glad you applied! I know you'll be happy with the whole thing.

Dylan saw a gentics Dr too, but these two checked things the other one never

did. Take pillows!

Cindylouwho

August 21, 2004

Cindy: I'm counting on it. Even Dr. Grubb, a cardiologist, was more

competent in checking how easily Meagh's joints dislocate than she was,

but she was very interested and accepted that he was able to do so. She

handled it very well saying she would be eager to meet and learn from

him....and she said she was going to contact him, which I am sure she

did. In her 3 page consult note that I just received this week she

thanked me for the articles that I provided her with written by him No

doctor has ever done that despite numerous articles I have provided.

She was open to my showing her Meaghans discoloration when standing and

how to check pulse and BP for POTS, as well as acknowledging the

substantial effect on quality of life and that Hypermobility Syndrome is

only benign in so far as it is not lethal in the way cancer is. So yes

she makes every effort to clarify and provide good referrals to doctors

so I am very pleased and I felt entirely comfortable with her....which

almost never happens for us.

However I do feel my comfort level has improved primarily because of the

informational support I have obtained here. Here, there is help for

getting through the nitty gritty everyday stuff that confounds a person.

Members here are sooooo knowledgable re TMJ, bracing, all the practical

stuff. Just the best!

Bernie

Re: Very sore.........../Grace\Cindy H

From: Bernadette

......I also sent off an e-mail to NIA/NIH to enrol Meaghan in the

study

despite her already having seen a geneticist here. Getting this

comprehensive work-up has got to be of benefit,... Bernie

************************************

I'm so glad you applied! I know you'll be happy with the whole thing.

Dylan saw a gentics Dr too, but these two checked things the other one

never did. Take pillows!

Cindylouwho

August 21, 2004