Janice...

My heart really goes out to you having that miserable doc tell you
your symptoms were "psychosomatic."  I get knots in my stomach
whenever I hear of a medical "professional" sticking that label on
someone.   In fact, prior to getting my PD diagnosis, I was told
by a coupla doctors  the vague symptoms I had experienced for 7
years were "in my head."

Uhhhh.... well in a way, that was a correct diagnosis, considering
where PD originates from, but DAMN, it hurts to be called a
hypochondriac when you KNOW you've got something wrong going on
inside you - something that's scary and ya can't hang a name on
it.

Listen, m'dear... if you're already taking vitamin E and calcium,
might I suggest sitting down with a big bowl of ice cream and
leisurely spooning it into your mouth, bite by bite
by bite?  Mmmmmmm, YUMMY!  HEY.... it ain't no cure for what ails
ya, but it's a WONDERFUL distraction. <LOL>  Your choice of
flavors, of course.... <smiling>

Barb Mallut
[log in to unmask]

-----Original Message-----
From: Janice Morgan <[log in to unmask]>
To: [log in to unmask] <[log in to unmask]>
Date: Tuesday, June 22, 1999 6:01 PM
Subject: Re: Bionic Barb


>Miss Barb,
>     Thank you, I do take vitamin 1200 I U and I also take 2000
mgs of
>Calcium aday. Just when I have been very active and play very
hard I get the
>leg cramps at night.  I am also trying to get my meds right. I
went to a new
>Doc and she took me off Sinemet and Parlodel and put me on Requip
that made
>me very sick. When  I  went  back to see her she told me that I
was
>psychosomatic and to a psychologist that I did not have PD. Then
I started
>to leave and she said then again I just might have it to come and
see her in
>six months. She would not give me any meds. So I went to see a
psychologist
>and he said that I was not psychosomatic. So I am back on Sinemet
two times
>aday 25/100 until I see my Doc at Kaiser in July. I feel much
better on it
>that off. Who would want this dumb pd any way not me for sure. I
do not
>planed to go back and see her again. She was a movement disorder
Doc.
>Janice 51 almost 52/50/46
>
>----- Original Message -----
>From: Barb_MSN <[log in to unmask]>
>To: <[log in to unmask]>
>Sent: Tuesday, June 22, 1999 12:28 PM
>Subject: Re: Bionic Barb
>
>
>> Thanks Janice!  And say, ya might wanna try taking approx.. 800
>> to 1200 ICUs of vitamin E daily to rid yourself of those nasty
leg
>> cramps   If you go ahead and take the vitamin E, you should
have
>> pretty speedy positive results.
>>
>> I've also had positive results from taking calcium (in a coupla
>> daily "TUMS" tablets), but prefer the vitamin E as my mouth
tastes
>> awful after the TUMS.
>>
>> So there ya are - getting not one, but two suggestions on how
to
>> rid yourself of them darn leg cramps!
>>
>> Barb Mallut (former member of the "Killer Leg Cramp Club")
>> [log in to unmask]
>>
>> -----Original Message-----
>> From: Janice Morgan <[log in to unmask]>
>> To: [log in to unmask]
<[log in to unmask]>
>> Date: Tuesday, June 22, 1999 7:40 AM
>> Subject: Re: Bionic Barb
>>
>>
>> >Hi Barb,
>> >      I woke up last night because I had bad leg cramps, I
though
>> I heard
>> >some one yell  YEEEEAAAAAHHHHHH!!!! I am very glad to hear it
was
>> you and
>> >that your voice is back. Love Janice
>> >----- Original Message -----
>> >From: Barb_MSN <[log in to unmask]>
>> >To: <[log in to unmask]>
>> >Sent: Tuesday, June 22, 1999 12:14 AM
>> >Subject: Bionic Barb
>> >
>> >
>> >> Dear List-family....
>> >>
>> >> YYYYYEEEEEHHHHAAAAAWWW!!! <---Barb, yelling LOUDLY in
>> excitement>
>> >>
>> >> As of tonite, I have my REAL voice back!   Back, and LOUD,
if
>> >> that's how I wanna speak!   YEA!!!!!!!!!!!!
>> >>
>> >> UCLA's Dr. Gerald Burke injected collagen into both vocal
cords
>> >> this afternoon, and  now at 11:45 p.m., my "normal' speaking
>> voice
>> >> has returned!!!!!!   Well, "returned" for
>> >> 3 to 6 months, anyway.... till the collagen's absorbed by my
>> body.
>> >>
>> >> But HEY - guess what?  Next time my "normal" voice starts
>> fading
>> >> away to a breathy whisper I'll have not one  option, but
TWO.
>> >> Yup folks... TWO, as in 1-collagen injections lasting 3 to 6
>> >> months, or,  2- a long-term ("long-term," as in as long as
the
>> PD
>> >> stays slow moving as it's been for almost 25 years) tiny,
>> >> man-made, hammer-shaped thingee implanted into my vocal
cords
>> via
>> >> the passage thru the thyroid capsule (inserted right THRU
the
>> >> capsule AROUND and/or past the thyroid).
>> >>
>> >> The tiny "thingee (has a long medical name which I can't
>> recall,
>> >> but I'll get it from Dr, Burke tomorrow and List-post it)
>> >> procedure accomplished in a 1/2 hour operation in the
doctor's
>> >> office and has been performed on folks with vocal cord
problems
>> >> for about 10 years or more, according to Dr, Burke and also
by
>> >> many other neck and throat specialists all over the world.
>> >>
>> >> Only recently has this type of surgery been done on Parkies,
>> and
>> >> WHICH Parkie gets it is decided by their own neck and throat
>> >> specialist/surgeon, based upon their PD being rather slow
>> moving
>> >> (as in slowly degenerating rather than swiftly moving).  I'm
>> not
>> >> too sure what constitutes "slowly moving" to the DOCTOR, but
to
>> ME
>> >> that means the vocal cords are stable enough to permit the
>> "tiny
>> >> thingee" to remain implanted for at LEAST a year or longer
>> before
>> >> needing to be replaced by a new one  cut to fit the changing
>> vocal
>> >> cords.
>> >>
>> >> Since I won't be a candidate for this procedure till the
>> collagen
>> >> which I got today is absorbed by my body (3 to 6 months),
>> >> obviously I cannot share more about this surgery till I've
had
>> it.
>> >> But since it's apparently so well known by neck and throat
>> >> specialists, if you'd like to know more about it (like
cost -
>> >> Medicare covers it, by the way), I suggest ya call the
nearest
>> >> teaching hospital/university and ask for their neck and
throat
>> >> clinic...  They 'll no doubt be able to fill ya in on this
>> >> relatively minor operation.
>> >>
>> >> OH.... and ya might hear some MD's saying this surgery ISN'T
>> for
>> >> PWP's, but Dr. Burke SWEARS it CAN be successful when
performed
>> on
>> >> a Parkie, provided the doctor makes sure BEFORE the
operation
>> that
>> >> the patient's PD is indeed slowly to degenerate.
>> >>
>> >> (NON-proofed for errors or typos)
>> >>
>> >> Barb Mallut (written in haste, 'cause I'm awfully tired now)
>> >> [log in to unmask]
>> >>
>> >
>>
>