On Tue, 22 Nov 2005, Magenta Raine wrote:

> Guess what!   My dad's sending me & a helper to Maui for my big 50th
> birthday! I'm really jazzed!

WOW Mage how cool is that!!  So who's your lucky staff person going 
with you?  Someone you reeeally like I hope.

Hey can I go?!!  With no legs, I think I could fit in one of your 
carry-on bags with noooo problem at all....And I'll be reeeeally quiet 
too!! HAHAHA

Happy hollidays to all!!-Gary

>
> "What is real but compassion, as we move from birth to death?"
> ~~Greg Brown~~
>
>
>> [Original Message]
>> From: ken barber <[log in to unmask]>
>> To: <[log in to unmask]>
>> Date: 11/22/2005 1:53:44 PM
>> Subject: Re: My water-retention problem
>>
>> i see a dystonia specialist and this is something that
>> people with dystonia can do is to foll a body part to
>> relax. i do this on a regular basis that is to fool
>> one part to relax at least temporarily. you can't stay
>> tense in one place to relax another one all the time,
>> but, i do give the worse place a break for a short
>> time.
>>
>> --- Jonathan Rand <[log in to unmask]> wrote:
>>
>>> My feet r very tender, I think because of abnormal
>>> stresses put on them.  It
>>> used 2 be much worse.  When symptoms of chemical
>>> sensitivity first started
>>> creaping up on me, I didn’t no what was happening.
>>> My movements became more
>>> normal at first.  Then I became very sleepy all the
>>> time.  Sometimes my
>>> movements became A LOT worse!  Neck spasms were
>>> choaking off blood 2 my
>>> brain, (or something like that).  Anyway, my feet
>>> were getting soar from
>>> walking “wrong” I guess.  4 a few years, I wore
>>> extra large shoes, & I wore
>>> them on the wrong foot, (left on right, etc.), to
>>> stop my feet from rubbing
>>> on the shoes.  Getting my toenails cut was like open
>>> heart surgery!
>>>
>>> But after I learned how 2 control the chemical
>>> sensitivity, my mobility
>>> problems seemed 2 “stabolize,” & walking became much
>>> easier.  I still don’t
>>> / can’t walk without shoes because my toes curl up
>>> under my feet, & they wud
>>> drag along the ground, (and that HURTS), but since
>>> my doctors weren’t really
>>> helping, I felt I was forced 2 try stuff on my own,
>>> & maybe I was somewhat
>>> successful.
>>>
>>> I still hate getting my toenails cut but it’s a
>>> thousand times easier now…
>>>
>>> I don’t know if other people can do this…  Maybe I’m
>>> weird.  But at 1 point
>>> I found that I was able 2 relax my feet wile
>>> walking, if I tensed up
>>> “something else.”  Like my legs, (or another part of
>>> my body).  Then my toes
>>> didn’t curl up, & my feet didn’t turn in as much.
>>>
>>> But I have ATHETOSIS as well as spasticity.  In som
>>> cases I get to CHOOSE
>>> between the 2.
>>>
>>> It’s a little complicated.  But r u able 2 relax a
>>> part of your body 2 take
>>> the pressure off it?  In order 2 do this, you hav2
>>> pay a price!  Another
>>> part of u will have to tense up.
>>>
>>> It looks like som people with ONLY spasticity, won’t
>>> b able 2 do this.  But
>>> I’m wondering if it can be learnt.
>>>
>>> I suspect there r many movement “schemes” people can
>>> adopt?  I only no wats
>>> happening 2 me….  (& wat it LOOKS like I’m seeing in
>>> others).  I cud be very
>>> off on this but I wanted 2 try 2 help, anyway.  :)
>>>
>>>                   Jonathan
>>>
>>>
>>>
>>>
>>>
>>>
>>>> From: Rayna <[log in to unmask]>
>>>> Reply-To: "St. John's University Cerebral Palsy
>>> List"
>>>> <[log in to unmask]>
>>>> To: [log in to unmask]
>>>> Subject: My water-retention problem
>>>> Date: Tue, 22 Nov 2005 13:47:52 +0800
>>>>
>>>> Had my appointment with my GP on Thursday morning.
>>> She took one look at
>>>> my feet, prodded them a bit with her fingers, and
>>> got an expression of
>>>> `oh, this really isn't good', on her face.  A bit
>>> unnerving, as my feet
>>>> weren't nearly as swollen as they have been in the
>>> evenings.
>>>>
>>>> She tested my BP - fine, took three vials of blood
>>> - sticking needles
>>>> into me is such a distressing situation for both of
>>> us (I have a
>>>> tendency to swear like a sailor in those
>>> situations, really cannot bear
>>>> invasive medical treatments, have had a few too
>>> many), that she figured
>>>> she may as well test for as much as possible while
>>> she was there.  Went
>>>> over other possible reasons for the water
>>> retention, agreed that lack of
>>>> excercise hasn't helped, but will get better now
>>> the weather is good,
>>>> she doesn't think that my salt intake is a cause or
>>> a problem -
>>>> something about living in a warm climate, didn't
>>> pay much attention.
>>>>
>>>> So she gave me a script for diuretics, and wants to
>>> see me in a week.
>>>> The diuretics do seem to be working - my feet are
>>> less swollen than they
>>>> were in the evenings, but still too swollen, wish
>>> they would work faster.
>>>>
>>>> It seems that I have weird little toes, they both
>>> turn under my  feet -
>>>> always have, and I thought that  was normal,
>>> apparently not - and in the
>>>> last few weeks that has meant that I've essentially
>>> been walking on my
>>>> toenails.  That explains the excruciating pain when
>>> I walk.  May have to
>>>> go to a podiatrist - the thought makes me
>>> physically ill.  I cannot bear
>>>> people fiddling with my feet - or even touching
>>> them.  I've spoken to a
>>>> few others with CP in the last couple of years who
>>> also have this
>>>> difficulty.  Does anyone else have problems with
>>> this, or have any ideas
>>>> as to the cause - physical or psychological?
>>>>
>>>> Rayna
>>>>
>>>> --
>>>>
>>>> Email: [log in to unmask]
>>>> http://www.livejournal.com/users/bookgirlwa/
>>>>
>>>> Yahoo Messenger: bookgirlwa
>>>> IM: bookgirlwa
>>>> ICQ: 205888629
>>>
>>
>>
>>
>>
>>
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