The service provider had a seminar last week. The guy from CARD said to
keep not only an extra month's supply of your meds in your grab and go bag,
but to make printed copies of all your prescriptions and put them in
secure plastic bag, (or I think I will get mine laminated), He also said
that the email circulating about triangle of life is probably NOT good
advice for a number of reasons. also said those in the US probably don't
have the same issues with buildings falling as those in Asia.
He says there is not anything a terrorist can do, that can't already
happen, so he doesn't lose sleep over it. By that he means, there will
always be fires, explosions, mother nature in the form of floods and
earthquakes and forest fires... if we are prepared for those, we are
prepared for terrorist attacks.
The seminar was great, and I am going to update my grab and go box to a
duffel bag, complete with trash bags and duct tape. he explained you can
use those items to make a port-a-potty, use them as room dividers, even as
clothes, or shoe covering when you are walking in a disaster zone.
The seminar made me think about our Kyle Cleveland. Has anybody heard from
him? How is he?
ah, so much to get done, so little time.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[log in to unmask]
Come visit my new store! http://www.cafepress.com/TamarMag
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> [Original Message]
> From: Kendall David Corbett <[log in to unmask]>
> To: <[log in to unmask]>
> Date: 3/13/2006 1:20:45 PM
> Subject: Re: New to list - intensive suit therapy - hand surgery?
>
> Yep, that's why we're getting a backup set up here in Laramie as well as
> learning everything we can from her neurologist in Cheyenne. From what
> we've found, the pump is the best solution for Janet's spasticity and
> dystonia.
>
> We went to Colorado Springs to get the pump implanted because the doctor
> down there was the best in the region, and one of the top 5 in the
> country.
>
> Withdrawal symptoms can also be lessened by use of oral Baclofen, and
> we'll definitely talk to the docs about what to do if there's a pump
> malfunction.
>
> Kendall=20
>
> An unreasonable man (but my wife says that's redundant!)
>
> The reasonable man adapts himself to the world; the unreasonable one
> persists in trying to adapt the world to himself. Therefore, all
> progress depends on the unreasonable man.
>
> -George Bernard Shaw 1856-1950
>
>
> -----Original Message-----
> From: Anthony Arnold [mailto:[log in to unmask]]=20
> Sent: Monday, March 13, 2006 2:09 PM
> To: [log in to unmask]
> Subject: Re: New to list - intensive suit therapy - hand surgery?
>
> I think a gal I know once was at camp, and for some reason they decided
> to
> wait to refill hers until after returning from camp, and something
> happened
> causing a withdrawal, and she almost past away. Sure there are lots of
> positives gained from the treatment, but I feel you really have to have
> a
> good support team. =20
>
> Thanks,=20
> Anthony=20
> Visit my website at www.anthonyarnold.net
>
> -----Original Message-----
> From: Cerebral Palsy List [mailto:[log in to unmask]] On Behalf
> Of
> Kendall David Corbett
> Sent: Monday, March 13, 2006 2:22 PM
> To: [log in to unmask]
> Subject: Re: New to list - intensive suit therapy - hand surgery?
>
> Anthony,
>
> I'd think so, for two reasons:
>
> 1. Janet's doc said that there can be some nasty withdrawal symptoms if
> the pump runs out, and=3D20
> 2. The pump could be damaged.
>
> Kendall=3D20
>
> An unreasonable man (but my wife says that's redundant!)
>
> The reasonable man adapts himself to the world; the unreasonable one
> persists in trying to adapt the world to himself. Therefore, all
> progress depends on the unreasonable man.
>
> -George Bernard Shaw 1856-1950
>
> -----Original Message-----
> From: Anthony Arnold [mailto:[log in to unmask]]=3D20
> Sent: Monday, March 13, 2006 1:10 PM
> To: [log in to unmask]
> Subject: Re: New to list - intensive suit therapy - hand surgery?
>
> I don't need a Baclofen pump personally (thank the lord), but I have
> some
> friends who have seen some reasonable success with theirs, but I do want
> to
> throw out a question. How important is it that Baclofen patients have
> their
> refills on a timely manner, let's say I was displaced by a hurricane,
> would
> locating a doctor to refill it be a high concern? =3D20
>
> Thanks,=3D20
> Anthony=3D20
> Visit my website at www.anthonyarnold.net
>
> -----Original Message-----
> From: Cerebral Palsy List [mailto:[log in to unmask]] On Behalf
> Of
> Kendall David Corbett
> Sent: Monday, March 13, 2006 1:28 PM
> To: [log in to unmask]
> Subject: Re: New to list - intensive suit therapy - hand surgery?
>
> Janet had surgery on the 3rd for a Baclofen pump; it's only been 10
> days, and she hasn't reached her final dosage level yet, but it appears
> to be having a noticeable positive impact on both her spasticity and
> dystonia. We found a great doctor in Colorado Springs, who'd done his
> residency and fellowship at the two places in the country that have
> published the most research on Baclofen pumps in people with CP,
> particularly adults.
>
> I belong to another list for people with hydrocephalus, and there's a
> mix of people with the condition and parents of kids with hydro, and
> most people include a brief descriptor of why they're on the list in
> their siglines. I think it's kind of nice, because as new people join,
> it's kind of like a built in introduction to them. As folks stay on the
> list, they get to know us as individuals, and the sigline descriptor is
> not as necessary.
>
> I see your point though, Kat; it's kind of like people are still meeting
> our (or a child's) disability first. I just reread my sigline for
> C-Palsy, and it doesn't mention Janet's or my CP at all.
>
> Kendall=3D3D20
>
> An unreasonable man (but my wife says that's redundant!)
>
> The reasonable man adapts himself to the world; the unreasonable one
> persists in trying to adapt the world to himself. Therefore, all
> progress depends on the unreasonable man.
>
> -George Bernard Shaw 1856-1950
>
> -----Original Message-----
> From: [log in to unmask] [mailto:[log in to unmask]]=3D3D20
> Sent: Monday, March 13, 2006 11:59 AM
> To: [log in to unmask]
> Subject: Re: New to list - intensive suit therapy - hand surgery?
>
> What kind of surgery?
>
> And as an aside, what's with the labels all the parents of CPs put in
> their
> sigs? I know y'all have your sigs on the parents' lists, but frankly I
> find those a wee bit offensive. Just my tuppence.
>
> Kat
>
> Original Message:
> -----------------
> From: lynette smilelaughgiggle [log in to unmask]
> Date: Mon, 13 Mar 2006 12:44:03 -0600
> To: [log in to unmask]
> Subject: Re: New to list - intensive suit therapy - hand surgery?
>
>
> Hi All,
>
> My son has upper body spasticity and we are looking at surgery on his
> hands.=3D3D20
> Has anyone experienced this with their child? Cody has a baclofen
> pump,=3D3D20
> got us through puberty....still a never ending battle.
>
> Blessings,
> Lynette LaScala, mom to Cody (post near drowning,CP)=3D3D20
>
>
> --------------------------------------------------------------------
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