Re: Digest Number 163

[Guest guest]

Dear CJD Friends-

I've been pretty quiet for a while, lurking and watching and trying to keep

up... I have to admit, I've skipped quite a few of the recent messages, not

because I'm not interested, but because of the constraints of time.

In the meantime, I've been accepted to the University of New Mexico School

of Medicine! I start next August.

Perhaps equally important, and the reason that I am writing, I am taking a

Microbiology course. Mostly we are studying bacteria, a little bit about

viruses, and practically nothing about prions. My professor has assigned a

class presentation to each of us, and I was assigned a urinary /

reproductive disease. I begged her to let me do CJD since we were doing so

little by way of prions in class, and - tah dah- she let me!

So- this is a request for guidance- does anyone have a suggestion of where

to find up-to-the-minute research on CJD that is accessible online? I'd like

to do a very basic to the more complex full spectrum everything you need to

know about CJD report, but I have only ten minutes to present it in. I'd

also like to do some transparencies and hand-outs- does anyone have any

suggestions where to go for presentable materials i.e. charts graphs etc? I

have a pretty small class filled mostly with nursing students, but I'd like

to leave a lasting impression on them re: the seriousness of this disease.

Our class, having focused mostly on bacteria, has left many people with the

impression that disease is limited to folks with compromised immune systems

or inappropriate behaviors. My understanding of prions suggests that

everyone is susceptible, and I'd like very much to simply but effectively

convey that fact by showing some basic chemistry and pointing out that

proteins and prions are so similar that your body can't effectively fight a

prion without fighting itself. Is that correct? I'd really hate to

oversimplify or even worse, give false information.

Since I'm on digest with the list, could you send a response to me directly

(and to the list, if you'd like)? My email is alexwade@....

I really appreciate any help at all, and hope to spread a little more

knowledge about CJD...

Yours, sincerely

Wade

[Guest guest]

Thanks Barbara You are an angel!!

Cathy

CSCluv**

http://community.webtv.net/cat926/doc

[Guest guest]

In a message dated 2/16/00 10:33:08 AM !!!First Boot!!!, CMTUS (AT) onelist (DOT) com

writes:

<< So I agree with the answer given by someone that the

proper answer is to find a doctor, regardless of type, who fully understands

the CMT, it's effects and what the foot needs to do after a procedure. >>

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Kudos to the advice! I haven't " spoken " in a while...My name is Barry, age

33, male. I was diagnosed at 13 with CMT by an orthopedic surgeon. He also

immediately brought in a neurologist consultation. I was fortunate that my

mother insisted on the best help she could find, and my father's insurance

allowed that to happen.

FYI...The guys were referring to Triple arthrodesis and osteotomy among other

things. The former being bone work done fusing the joint in the ankle and

the latter being the process of cutting a wedge of bone out of the heel.

I had the osteotomy done on both feet at age 13. The purpose was to lower

the arch in my foot as it was beginning to become painful. I believe the

surgery, although painful, was a great success as did the surgeon. The

triple arthrodesis was done at age 19. Again, it was done to relieve pain

and pressure that accompanies very high arches. It was probably the most

physically painful thing I've ever experienced. The result was also

successful although it probably took me about 5 years to realize it. I

wished I had had it done at a younger age thinking children are more

resilient, but then again the gains achieved might have been better since

waiting until it was more necessary. You never can tell.

We should make our best decisions based on the information available at the

time. Then try to spend little time worrying about what might have been

better.

I have not had foot surgery since age 19 (14 years ago). The only pain I

experience now is in the heel of my feet. I begin wearing AFO's 3 years ago.

Initially I hated the idea, but after a few weeks I could not deny the fact

that they made me much more mobile. I still struggle with not wanting people

to know that I wear them. That said, I can also honestly say that I know

intellectually that it has not slowed my social or personal life. I ended a

difficult 8 year relationship 3 years ago. It took about 10 months to get

comfortable with going out again. Since then I have dated 4 different women,

not to mention another half dozen that lasted only through the first or

second date. Not one time did my CMT or ankle braces cause any strain on the

relationships.

Even people with no apparent physical problems experience self conscious

behavior or periods of low self esteem. The key is to recognize that it is a

normal part of life. Accept the downs and enjoy the ups!

My two cents,

Barry

[Guest guest]

Barry,

Glad to see you posting again! Your " two-cents " is always worth a lot more

than that!

>>~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>Kudos to the advice! I haven't " spoken " in a while...My name is Barry, age

>33, male. I was diagnosed at 13 with CMT by an orthopedic surgeon. He

>also

>immediately brought in a neurologist consultation. I was fortunate that my

>mother insisted on the best help she could find, and my father's insurance

>allowed that to happen.

>

>FYI...The guys were referring to Triple arthrodesis and osteotomy among

>other

>things. The former being bone work done fusing the joint in the ankle and

>the latter being the process of cutting a wedge of bone out of the heel.

>

>I had the osteotomy done on both feet at age 13. The purpose was to lower

>the arch in my foot as it was beginning to become painful. I believe the

>surgery, although painful, was a great success as did the surgeon. The

>triple arthrodesis was done at age 19. Again, it was done to relieve pain

>and pressure that accompanies very high arches. It was probably the most

>physically painful thing I've ever experienced. The result was also

>successful although it probably took me about 5 years to realize it. I

>wished I had had it done at a younger age thinking children are more

>resilient, but then again the gains achieved might have been better since

>waiting until it was more necessary. You never can tell.

>

>We should make our best decisions based on the information available at the

>time. Then try to spend little time worrying about what might have been

>better.

>

>I have not had foot surgery since age 19 (14 years ago). The only pain I

>experience now is in the heel of my feet. I begin wearing AFO's 3 years

>ago.

> Initially I hated the idea, but after a few weeks I could not deny the

>fact

>that they made me much more mobile. I still struggle with not wanting

>people

>to know that I wear them. That said, I can also honestly say that I know

>intellectually that it has not slowed my social or personal life. I ended

>a

>difficult 8 year relationship 3 years ago. It took about 10 months to get

>comfortable with going out again. Since then I have dated 4 different

>women,

>not to mention another half dozen that lasted only through the first or

>second date. Not one time did my CMT or ankle braces cause any strain on

>the

>relationships.

>

>Even people with no apparent physical problems experience self conscious

>behavior or periods of low self esteem. The key is to recognize that it is

>a

>normal part of life. Accept the downs and enjoy the ups!

>

>My two cents,

>Barry

>

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