|
|
|
MORE GOOD NEWS!
I already told you about my husband's general improvement since he cut
down on protein. Well, today we went for a return visit to a doctor who
was going to do surgery on his drooping eyelid (which was obscuring his
vision). We looked at the photo of his eyelid as it was six months ago,
when the photo was taken and now, and the doctor was incredulous. My
husband doesn't need the surgery anymore, the droop is gone!
I told him that I had read on the internet that drooping eyelids can be a
symptom of PD and he knew nothing about that. Can anyone provide some
citations that I can refer to him on this subject?
Thanks.
On Wed, 22 Nov 1995, Automatic digest processor wrote:
> There are 38 messages totalling 3678 lines in this issue.
>
> Topics of the day:
>
> 1. VIM Surgery
> 2. LIQUID SINEMET
> 3. diagnosis confirmed
> 4. Sleep problems in PD (3)
> 5. Sensitivity (2)
> 6. Medcation breakdown (2)
> 7. Finding references to feeding tubes
> 8. cuban surgery (2)
> 9. protein (2)
> 10. Parkinsons Chat Channel Update
> 11. Janet Reno's E-mail Address
> 12. <No subject given>
> 13. Reno, NPF
> 14. DETECTING PARKINSON'S
> 15. What is end-stage PD? (2)
> 16. Thanksgiving Thoughts......
> 17. Welcome
> 18. Medication Breakdown (3)
> 19. Book by dad
> 20. AOL's CLINIC (3)
> 21. Happy Thanksgiving to all
> 22. comments and a question
> 23. Sixty Minutes 11-19-95
> 24. Budget Update
> 25. Address for the list and the listserver
> 26. .
> 27. PD symptoms
>
> ----------------------------------------------------------------------
>
> Date: Tue, 21 Nov 1995 00:01:14 -0500
> From: Fred Ziess <[log in to unmask]>
> Subject: Re: VIM Surgery
>
> joanne,
>
> i would be most appreciative, if you would fax the vim
> surgery article to me
>
> at 212 722 7845
>
>
> fredpd1 fred
> ziess
>
> fund the
> research
> find the
> cure
>
> ------------------------------
>
> Date: Tue, 21 Nov 1995 01:30:28 LCL
> From: Carol Gray <[log in to unmask]>
> Subject: Re: LIQUID SINEMET
>
> HI JOYCE--
>
> I am doing better on LS now. I have found by trial and error that the
> water mixture doesn't do the job as well as the OJ mixture. So I couldn't
> agree more! Also, I have developed the following pattern----(I have
> insomnia) 4 am - 1 S 25/100 in 4 oz OJ
> 1 permax (1mg) 1 eldepryl - 1 amantadine
> 5 am - 1 S in 2 oz OJ
> 6 am - " "
> 7 am - " ""
> 8 am - "
> 9 am - permax-1 mg
> amantadne -
> 11 am 1 S in 2oz OJ
> 1 pm 1 S in 2 oz OJ
> 1 Permax
> 3 pm - 1 S in 2 oz, OJ
>
>
> 5:00 pm - 1 S in 2 oz OJ
>
> 7 pm - " "
>
>
> Of course I am drinking a lot of water! I know that there are
> different opinions about food intake but I for one have to really watch
> my protein in the AM. I guess we are like different parts to
> a puzzle---- our change in symptoms keep us constantly seeking
> the perfect fit.
>
>
>
>
>
> Carol Gray <[log in to unmask]>
> y yyyyyyyyyy
> >From: Joyce Tames <[log in to unmask]>
> >Subject: Re: NADH update
> >To: Multiple recipients of list PARKINSN <[log in to unmask]>
> >
> >Hi Lisa
> >Yes I am taking Vit C only 2 teaspoons when I mix 1000cc of L>S>
> >I was taking 3000 C before L>S> so I figured that almost a quart of OJ +
> 2000
> >shud be abt the same
> >
> >Yes, since dr. ordered 3000 units of E two years ago, I try to
> remember
> >taking it daily but u kno, with 32 pills + 10 Sinenet as LS its hard to
> >think abt taking 4 more (E)
> >
> >the L>S> is working even it means not getting the toe and foot
> cramping
> >daily as I was before L>S> Now, I do freeze and I still get stiff but
> it
> >doesnt last as long.
> >
> >Lisa, I made a bad mistake....I ran out of OJ one night I mixed the
> pills
> >in water with the powered C WOW DID I HAVE A BAD REACTION AND
> TERRIBLE
> >DAY UNTIL ABOUT 3PM WHEN WE FIGURED OUT THAT THE WATER MIX WAS NOT GETTING
> >INTO MY BLOOD STREAM....I THREW OUT THE WATER MIX MADE AN OJ MIX AND
> WAALAA
> > IT WORKED
> >
> >Lisa, I have been experimenting even further with the LS Instead of
> >taking 2 shot glasses each hour Im taking 1 every 1/2 hour. Chuck
> >thinks it works better but im a little put off because now i (more than
> ever)
> >live with the clock every 1/2 hr drink every few hours swallow
> >pills.... i think im going COO COO.
> >
> >BUT NO TOE CURLING THATS THE MOST IMPORTANT
> >
> >stay in touch
> >
> >joyce
> >
> >
>
> ------------------------------
>
> Date: Mon, 20 Nov 1995 22:49:36 -0700
> From: Debra <[log in to unmask]>
> Subject: Re: diagnosis confirmed
>
> Hi Arlene, I am new here and this is news to me, although I am leaning alot
> in this short time. I am sure my mother-in-law must know about PD diet, but
> then again she doesn't listen to anything when it comes to her food. She
> loves it all, expecially her meat, (this could be tough) We could spend
> hours at the grocery store just at the meat department. But, this is
> something I am definitly going to look into. Thanks. It worth a try and
> see if it makes a difference.
>
> Thanks
> Debra
> mharper@worldgate
>
> You wrote:
> >Interestingly, neither doctor ever mentioned the importance of a low
> >protein diet. I had read something about it on this list and cut down on
> >the protein intake on my own.
> >
>
> ------------------------------
>
> Date: Tue, 21 Nov 1995 01:11:39 -0800
> From: gilbert doroff <[log in to unmask]>
> Subject: Sleep problems in PD
>
> Is there anyone out there who uses Eldepryl and who also uses Melatonin
> as a sleep enhancer? If so, how much of the melatonin works for you?
>
> ------------------------------
>
> Date: Tue, 21 Nov 1995 06:44:44 -0800
> From: Jeff Jones <[log in to unmask]>
> Subject: Re: Sensitivity
>
> Good day,
> As a "caregiver" it is my preference to know the whole picture. It is
> my nature to want to understand what is to be expected as well as what the
> current situation is. This allows me to make informed decisions as I need to.
> I'm not, by any means, going to dwell on the negatives, but will consciously
> seek the positive in each situation, although this is sometimes a pain in the
> data base to do. Sigh.....
>
> I believe that Becky wants to understand the whole picture as well,
but
> she has a challenge in that she worries, maybe overmuch. She would rather
plan
> for future possibilities than to be surprised.
>
> Thus endth my 02 cents.
> Jeff Jones
>
> ------------------------------
>
> Date: Tue, 21 Nov 1995 09:34:49 -0500
> From: Margaret Tuchman <[log in to unmask]>
> Subject: Re: Medcation breakdown
>
> Sinemet CR does have a 25/100 dosage. They are pink tablets.
> M.Tuchman
>
> ------------------------------
>
> Date: Tue, 21 Nov 1995 10:07:36 EST
> From: Peter Flintermann <[log in to unmask]>
> Subject: Re: Medcation breakdown
>
> There is a 25/100 CR in addition to the regular one of that dosage--
> we have a bottle of them--they are the same color as the 50/200 six ze
> but much smaller. Ask your doctor about them! It is confusing to have the
> same dose available in both forms, so be sure to specify Sinemet CR when
> you ask about it.
> Camilla and Peter(who takes it sometimes)Oxford,OH
>
> PS Chuck--will add you.
>
> ------------------------------
>
> Date: Tue, 21 Nov 1995 08:47:48 -0700
> From: Debra <[log in to unmask]>
> Subject: Re: Finding references to feeding tubes
>
> Thank you Ann, the information has been most helpful.
>
> Debra
> [log in to unmask]
>
> ------------------------------
>
> Date: Tue, 21 Nov 1995 11:02:53 -0500
> From: Fred Ziess <[log in to unmask]>
> Subject: Re: Sleep problems in PD
>
> I. take 10 mgs of melatonin about 30 minutes before
> bedtime and
>
> 10 mgs three to four hours after initation of sleep
>
> Melatonin has a half life of approx. 3 hours.
>
>
>
> fredpd1
> fred ziess
>
> fund the researc
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
> find
> the cure
>
> ------------------------------
>
> Date: Tue, 21 Nov 1995 11:29:09 -0500
> From: Fred Ziess <[log in to unmask]>
> Subject: cuban surgery
>
> In a "REUTERS" news report of november 10, ,1995, it was
> said
>
> that " Cuban and spanish surgeons used a new technique successfully to treat
>
>
> PARKINSONS DISEASE. '
>
> The report was published in the cuban newspaper "GRANMA".
>
> It also said that the surgeries were carried out by a team of
> doctors from
>
> from cuba and spain at " The Clinica Quiron in San Sebastian, Spain.
>
> If anyone has more information about these operations, please
>
> fax me at 212 722 7845 or call me at 212 348 5335 collect or "E mail
>
> or post to me at v FRED ZIESS 120 East 89 St. New York
> N.Y. 10128
>
>
> fredpd1 55/ 10 years
>
> ------------------------------
>
> Date: Tue, 21 Nov 1995 08:34:29 -0800
> From: Joanne Sandstrom <[log in to unmask]>
> Subject: protein
>
> I wish I could say that lowering protein intake (or at least changing when
> protein is eaten) had had some effect on Don's condition. At least in his
> case, however, it makes no difference. He's ecstatic, being a meat and
> potatoes man like his father. I worry, but the doctor says as long as it
> doesn't affect his reaction to his meds and as long as his cholesterol stays
> low, forget it. Eat what makes you happy.
>
> Oh, well
>
> Joanne Sandstrom
> [log in to unmask]
>
> ------------------------------
>
> Date: Tue, 21 Nov 1995 08:36:37 -0800
> From: Allan Netick <[log in to unmask]>
> Subject: Re: Parkinsons Chat Channel Update
>
> I use NetScape 2.? to explore the internet on my Powermac. Apparently,
> if I understand, chat software is necessary to contact the undernet
> channel you describe. I have found a lot of downloadable windows
> software, but haven't had much success finding Mac programs. Do I need
> one? Do they exist? Do you know where?
> Hoping to join the undernet....
>
> [log in to unmask]
>
>
> ------------------------------
>
> Date: Tue, 21 Nov 1995 08:42:57 -0800
> From: Mary Yost <[log in to unmask]>
> Subject: Janet Reno's E-mail Address
>
> To Jim Ryan -- This is as far as I made it when trying to reach Janet Reno.
> Perhaps snail mail would be more effective after all.
>
> >From: "Eric Miller, STS/OTS, 202-514-8184" <[log in to unmask]>
> >To: [log in to unmask]
> >Subject: Attorney General Reno
> >Date: Tue, 21 Nov 1995 9:27:40 -0500 (EST)
> >
> >Ms. Yost:
> >
> > Thank you for your message. We don't yet have a mail gateway
> >that will permit you to send mail directly to Miss Reno. I will
> >forward your message to her office through our internal mail
> >system.
> >
> >
> > Date: Mon, 20 Nov 1995 19:08:29 +0100
> > To: [log in to unmask]
> > From: Mary Yost <[log in to unmask]>
> > Subject: Attorney General Reno
> >
> > Dear U.S. Department of Justice Web Managers,
> >
> > Does Attorney General Janet Reno have an e-mail address which members of
> > the public can use to send messages to her? I would like to convey my
> > appreciation to her for the way she disclosed her news about Parkinson's.
> > Also our group would like to offer her our support in whatever way
> > that would be most useful to her. If you would please send me her
> > address, we would be most appreciative.
> >
> > Sincerely,
> >
> > Mary Yost
> > Young Parkinson's Support Network
> > Los Angeles Metro Area
> >
> > internet: [log in to unmask]
> >
> >
> >
> >---------------------------------------------------------------------------
> >-----
> >Eric C. Miller
> >Justice Management Division
> >Systems Technology Staff
> >Office Technology Service
> >
>
> ------------------------------
>
> Date: Tue, 21 Nov 1995 12:02:11 -0500
> From: Barbara Patterson <[log in to unmask]>
> Subject: <No subject given>
>
> Date: Tue, 21 Nov 1995 11:22:43 -0500
> From: [log in to unmask] (Jerry Swartz)
> Subject: Canadian PD Patient From Windsor Patient Has A Pallidotomy
>
> IMPORTANT NOTICE
>
> Watch CBC Thursday November 23, The Health Show At 7 Pm
>
> A Canadian Patient From Windsor Has A Pallidotomy At Toronto Western
> DR. Lozano and Great Surgical team Performed The Surgery.
>
> It's about Time We Recognize, The Quality Of Doctors We Have In
> Canada and Give Them The Credit they deserve.
>
> THANK 'S TO CBC TELEVISION WE ARE DOING THAT.
>
> ------------------------------
>
> Date: Tue, 21 Nov 1995 12:11:51 -0400
> From: Bernie Bessette <[log in to unmask]>
> Subject: Re: cuban surgery
>
> Please send me a copy of the cuban "Granma" report.
>
> Thanks,
>
> Bernie
>
> > In a "REUTERS" news report of november 10, ,1995, it was
> > said
> >
> >that " Cuban and spanish surgeons used a new technique successfully to treat
> >
> >
> >PARKINSONS DISEASE. '
> >
> > The report was published in the cuban newspaper "GRANMA".
> >
> > It also said that the surgeries were carried out by a team of
> >doctors from
> >
> >from cuba and spain at " The Clinica Quiron in San Sebastian, Spain.
> >
> > If anyone has more information about these operations, please
> >
> >fax me at 212 722 7845 or call me at 212 348 5335 collect or "E mail
> >
> >or post to me at v FRED ZIESS 120 East 89 St. New York
> > N.Y. 10128
> >
> >
> > fredpd1 55/ 10 years
> >
>
> ------------------------------
>
> Date: Tue, 21 Nov 1995 10:13:52 -0800
> From: "J.R. Bruman" <[log in to unmask]>
> Subject: Reno, NPF
>
> Recent news about Janet Reno's PD diagnosis was a windfall for an alert
> Kim Seidman, director of National Parkinson Foundation's west coast
> headquarters. For those who don't live in the San Fernando Valley, Kim
> was able to get a cover and 2-page spread on PD in yesterday's magazine
> section of the local paper, the Los Angeles Daily News. Besides the Reno
> story and a pretty good tutorial on PD, the article features local PD
> patient Joanne Nelson, who has been very active in lobbying for the
> Udall Bill. The article also lists phone numbers for information and
> referral centers supported by NPF, throughout southern California. By
> raising public consciousness of PD and the value of more research
> funding, this PR success really turned lemons into lemonade. The NPF
> deserves your support.
> Cheers, Joe
>
>
> J. R. Bruman (818) 789-3694
> 3527 Cody Road
> Sherman Oaks CA 91403
>
> ------------------------------
>
> Date: Tue, 21 Nov 1995 13:37:54 -0500
> From: Jessie Masterson <[log in to unmask]>
> Subject: DETECTING PARKINSON'S
>
> /December Reader's Digest 1995 "News from The World of Medicine" page 121
> Dr. Edwin Montgomery from the U. of AZ and Dr. William Koller from U of
> Kansas Medical Center have a new test for Parkinson's . It can detect
> symptoms in the earliest stages.
> " Since a drug is available that may slow Parkinson's there is
> trememdous pressure to diagnose as early as possible" AP
> My question is the drug Eldepryl ?
>
> Thank you. [log in to unmask] Jessie Masterson 71/1/PD
>
> ------------------------------
>
> Date: Tue, 21 Nov 1995 10:11:46 -0900
> From: Helen Ormsby <[log in to unmask]>
> Subject: Re: What is end-stage PD?
>
> My ignorance may be showing, but what is end stage PD? My father died of
> parkinson's. He died rather peacefully. He had to be placed in a nursing
home
> because he had become too difficult for my mother. That is, he was 83, she
was
> 80, he had started to wander in the night, she would try to help, he would
fall,
> and she would get the worse of it. She took two real bad falls. He died in
his
> sleep two weeks after placement in the nursing home. He had had PD for 11
years
> and outside of his increasing dementia, his physical symptoms were not too
> extreme. He was quite rigid and lost balance, but none of the horror stories
I
> have read on this list. So I wonder is there a set end-stage or might it
differ
> just as the early and middle stages seem to differ for all of us?
>
>
> ------------------------------------------------------------
> Helen Ormsby [log in to unmask]
>
> "Old soldiers never die. Young ones do."
> ------------------------------------------------------------
>
>
> ------------------------------------------------------------
> Helen Ormsby [log in to unmask]
>
> "Old soldiers never die. Young ones do."
> ------------------------------------------------------------
>
> ------------------------------
>
> Date: Tue, 21 Nov 1995 11:12:29 -0800
> From: "C. Louise" <[log in to unmask]>
> Subject: Sensitivity
>
> Agree with you suggestion Donna K... about thinking twice before posting
> about sensitive issues dealing with PK. Recall when spouse Gene attended his
> first PK support meeting in 1989. Normally a talkative/outgoing type, he
> was closed mouthed about it for a couple of days. Seems he didn't feel
> he had found any kind of support. Instead, he found about 5 PK people
> who sat griping about their spouses, caretakers, and complaining about just
> everything else in general. Needless to say, he has not made a
> return visit.
>
> This topic reminds also of the first time a cousin of my husband called
> after learning Gene had been diagnosed with PK. The conversation started out
> with the fellow sounding condescendingly concerned. Fortunately, for
> him, my husband forgave his stupidity. By the time their conversation
> ended, someone hopefully went away becoming a little better informed
> about PK. Although, I believe, he was a bit disappointed to learn Gene
> wasn't hurrying out the door to check into the nearest nursing home.
>
> Best Thanksgiving wishes to all!
>
> Clara Nistler
> [log in to unmask]
>
> ------------------------------
>
> Date: Tue, 21 Nov 1995 11:12:25 -0800
> From: David Boots <[log in to unmask]>
> Subject: Thanksgiving Thoughts......
>
> Now here's a poem sure to please you
> About David's famed dyskinesia
> Be forewarned, you weak of heart
> If everyone is ready,
> The tale will now start
>
> Twas Turkey Day across the land
> And David's family was all at hand
> Brothers and sisters, the whole famiy
> When someone said
> "Who'll carve the turkey?"
>
> With Dad deceased for many years
> And David's medicine working
> He thought he'd volunteer
> His neurons were in high gear
> When suddenly his arm started jerking
>
> I'll spare you the details
> The blood and the gore
> David's rush of endorphins
> Has now made him an orphan
> And no one asks him to carve anymore.
>
> ------------------------------
>
> Date: Tue, 21 Nov 1995 13:12:59 EST
> From: NIGEL COCKLE <[log in to unmask]>
> Subject: Welcome
>
> Barbara
>
> Thanks for the welcome to the group - I've already found some useful hints in
> the mail over the last couple of days. I joined the net mainly to find out
what
> treatment is becoming available on your side of the pond. (I live near Chester
> in the north of England). I belong to the local Parkinsons Disease Society and
> will be sharing the information with them.
>
> I've had Parkinsons for about 12 years but thankfully it is progressing
fairly
> slowly. I have times when it is difficult to move but I find as long as I
keep
> active the symptoms hold off. I walk in the hills alot, I can still walk for
> ten miles or so.
>
> Looking forward to lots of chat in the future.
>
> Nigel Cockle.
>
> ------------------------------
>
> Date: Tue, 21 Nov 1995 13:12:50 EST
> From: NIGEL COCKLE <[log in to unmask]>
> Subject: Medication Breakdown
>
> TO P. Schark
>
> I've had Parkinsons for about 12 years and use Sinemet CR. I have had
difficulty
> in controling the level of the drug reaching the brain but have got fairly
good
> at staying mobile. Try the following:
>
> 1. Keep off protein during the day. Try to keep to small but frequent amounts
of
> carbohydrate. If you can stay a bit hungry it makes sure that food carries the
> tablet into the intestine within about 45 minutes. If it does seem to be
stuck,
> a drink of coke or any sweet fizzy drink often helps.
>
> 2. I take half a tablet every two and a half hours. I decrease the time
between
> tablets if I am doing something very energtic. Make sure you wash the tablet
> down from the throat. I use a pill box with a timer from Radio Shack to make
> sure I don't forget.
>
> 3. Keep active. I find that a daily walk or visit to a gym is a great help.
>
> 4. I carry Madopar dispersable with me and take a top-up if I feel an off
period
> coming on.
>
> 5. When I need to l keep mobile, when walking in the country for example, I
> carry a syringe of apomorphine with me and take a Domperidome tablet to avoid
> sickness.
> I don't often use it as the Apomorphine side effects are a bit unpleasant but
at
> least its a guaranteed way of keeping mobile and out of danger.
>
> Hope you find some of this useful - it works for me most of the time.
>
> Nigel Cockle.
>
> ------------------------------
>
> Date: Tue, 21 Nov 1995 15:05:22 -0500
> From: Chris Brenner <[log in to unmask]>
> Subject: Book by dad
>
> --
> --PART-BOUNDARY=.19511211505.ZM2550.ucs.indiana.edu
> Encoding: 7 TEXT
> Content-Type: text/plain; charset=us-ascii
>
>
> Her is a book recently written by my father. Comments are welcome by
> snail mail or through me via e-mail at [log in to unmask] Please
> forgive the numerous spelling errors and bad text output as he is a PD
> patient and has trouble with a keyboard.
>
>
>
> --PART-BOUNDARY=.19511211505.ZM2550.ucs.indiana.edu
> Encoding: 2638 X-Zm-quoted-printable
> X-Zm-Content-Name: pkdisbook.txt
> Content-Description: plain text
> Content-Type: text/plain ; charset=iso-8859-1
> Content-Transfer-Encoding: quoted-printable
> X-Zm-Decoding-Hint: mimencode -q -u
>
> This E-text book was written by Bill Brenner of 5 Cole Street in Hampton,=
> NH =
>
> 03842. Hw would be interested in hearing your comments by mail. While h=
> e makes
> it freely available to the community of Parkinson's patients and their
> families, he retains all copyrights. Printed copies are available.
> =
>
> ACKNOWLEDGEMENTS
>
>
> =
>
> In a book such as this it is difficult to separate the emotion=
> al
>
> aspects from the mere facts as they were in reality. There were con=
> =A9 =
>
>
> frontations between and within the families of relatives and in-law=
> s
>
> which led to much bickering and I was in a state of limbo for a
> =
>
> significant period of the fray. My health care was somewhat debatab=
> le
>
> because of the influence of medicine which bore heavily on my perso=
> nal
>
> makeup.I begin these credits after acknowledging a professional job=
>
>
> well done by the doctors,nurses, and staff of the University =
>
> =
>
> Medical Center.
>
> Upon leaving the center for the first time, I was not =
> quite
>
> at the stage I am now enjoying, so much credit must be given my mot=
> her
>
> who welcomed her son back after much turmoil. It goes without sayin=
> g,
> ,
> to her I dedicate this book which is my payment for her love and tr=
> ust
>
> throughout the seven years remaining in her life. Godspeed !!! =
> =
>
> =
>
>
> ( MAY THE FORCES OF THE UNIVERSE BE WITH YOU ALWAYS ! } =
>
>
>
> I wish to thank MS.Thelma Mosher whose support and patience
> -------------------------------------------------------------------=
> -
> as a caregiver guided me through some tenous moments during this
> ------------------------------------------------------------------
> period. Also to my brother Al who provided the intellectual stimulu=
> s
>
> which kept my mind from becomming 3lbs. of mush. To the friends of =
> the
> =
>
> " Anchorage" who displayed a kindred spirit: Ann Justin, Marge and=
>
>
> Jack Grady, Hazel Clifford , and other people in the neighborhood wh=
> o =
>
>
> were generous with their time. To those contributors remotely locate=
> d
>
> who gave me support and advice : my brother Peter,my sons Gregory,
>
> Chris and their mother Norma, to Helen Brown and the Brown family. =
> =
>
> =
>
>
>
>
>
> Hey Mister, you walk funny !
> =
>
>
>
>
>
>
>
>
> by bill Brenner
>
>
>
>
> Upon leaving the center for the first time, I was not quite a=
> t
> the stage I am now enjoying, so much credit must be given my mother who
> welcomed her son back after much turmoil. It goes without saying, to her=
>
> I dedicate this book which is my payment for her love and trust througho=
> ut
> the seven years remaining in her life. Godspeed !!! =
>
>
>
>
> INTRODUCTION
>
>
>
> The motivation for this book was a long time in the making-only
>
> after surviving a drug holiday in 1985 did I or anyone else suggest
>
> a notion to attempt a book on the subject.There is no one better
>
> qualified to sound off about a disease than one like myself who
>
> has experienced the humiliating and dibilitating effects over the
>
> last twenty- five years.My professional experience as an Electrical
>
> Engineer introduced me to many and varied challenges of a scientific
>
> nature but these challenges are insignificant when compared to the
> =
>
> suffering entailed by those who face a daily challenge of just being
>
> able to get oneself out of bed,dress,and fix a meal without assist-
>
> ance or by means of a prop ( aid ).As I sit here writing this intro-
>
> duction,I harbor the ever present fear of locking up or what is com-
>
> monly referred to as freezing - in fact that just what happened as I
>
> was about to finish this sentence the medicine in my body dissi-
>
> pated and I am writing the completion of this sentence the following
>
> day.
>
>
>
> It is not sympathy I am trying to gain by the writing of this
> =
>
> book - sympathy doesn't buy any bread ! I believe most people with
>
> a disability shy away from exposure to overt signs of affection for
>
> their affliction.What I hope to accomplish in the following is an
>
> understanding of the disease, the outward signs of the illness,the
>
> varied types of medicine which combat the disease-what you as an
>
> outsider not having Parkinson's can do when you cross paths with a
>
> sufferer and a general education on the subject which you might
>
> be afflicted with later in life or someone close to you might have.
>
> I recently saw a figure which said that there were about 43 million
>
> people in the U.S.A. with the disease - a number which surprised
>
> me. As the averagee age of the population becomes older the
>
> percentage of the population with P.D will increase - there is yet
>
> no cure and I believe what will occur is that the medicine will
>
> get better but you will always have to contend with drugs which
>
> alleviate the effects.
>
> =
>
>
> Although P.D is more common in the older citizens( over 60 year=
> s)
>
> some people fall prey to the disease early in life even in their
>
> teens.The mind is usually not impaired, so as common with many chronic=
>
>
> illnesses the problem becomes - what are we as responsible
> =
>
> people going to do about this usually wasted potential? It's a
>
> dilemma which staggers the imagination.Even a national health
>
> program however comprehensive would more than likey not cover the
>
> outstanding cost of the many types of medicine.I would the find the
>
> discomfort factor excruciatingly diffcult to deal with were it not
>
> for the miracle of modern medicine- it boggles my mind to think there
>
> are people out there who can't afford the medicine and continue to
>
> suffer without relief.To those who are uncaring of this travesty
>
>
>
>
>
> I say ( Hemingway ) : For whom the bells toll - they toll for thee!
>
>
> =
>
>
>
> CHAPTER I
>
> THE BEGINNINGS
>
>
> As this chapter is being written , I am 60 years old and with =
> =
>
> =
>
> little doubt I and my doctors believe well into the throes of Parkin=
> son's
>
> Disease. My illness was first diagnosed as PD ( circa MAY 1970 ) wh=
> en
> =
>
> I saw a doctor (GP) complaining about a shaky right hand. This was m=
> y
> =
>
> first introduction to the disease.The outward signs of PD can be
>
> seen in my case,with hindsight, much earlier than I apparently could=
>
>
> foresee. A few early incidents are recalled which I believe are rele=
> vant.
>
> =
>
> I recall one Halloween night my mother lent me some clothes for =
> a
>
> costume, amongst the items were a pair of earrings which looked expe=
> nsive
>
> to a child of my age( about 10 or less ). As luck would have it, I
>
> lost one of the earrings in my travels and to my chagrin had to face=
> up =
>
>
> to my mother. I was shaking unnaturally and uncontrollably and the f=
> irst
>
> thing she said to me " Why are you shaking so much ? ". After relay=
> ing
> ..
> my unfortunate tale she said " The earrings were worthless anyway". =
>
> =
>
> =
>
> During my freshman year of college ( eighteen years old ) tried=
> out
>
> out for the track team and as a qualifying stint was asked by coac=
> h
>
> to run a few laps around the gymnasium floor - which I proceeded to=
>
> =
>
> do. After completing the laps, the coach said to me " Why do you s=
> lap =
>
> =
>
> the floor so hard with your right foot". No response from me.
> =
>
>
>
>
>
>
> =
>
>
> Once I was certain of my affliction , I tended to watch for some=
>
> =
>
> signposts along the way - I disovered some old home ( circa 1969) =
>
>
> movies of the children. I observed in one film clip that upon =
>
>
> walking my right arm did not swing back and forth - a common test=
>
>
> usually performed by your neurologist. The abnormal walk is on of th=
> e
>
> early indications of a neurological problem.
>
>
> By the mid-seventies ( around 1975 ,age 41 ),I was being
>
> treated with Sinemet for limping in the right leg, stiffness in my
> =
>
> right arm, bending in my right wrist, crimping of my left big toe,
>
> and loss of balance. Could not sleep at night without medication.
>
> The early early eighties were some turbulent times for me culminatin=
> g
> =
>
> in a visit to Boston ( AUGUST 85 )- spending three months at B.U Med=
> ical
> =
>
> Center where I underwent a drug holiday - it must have been a su
>
> or I would not be writing this book today. In the summer of " 93 "
>
> my son gave me an old IBM Personal Computer which the family had for=
>
> =
>
> a number of years prior to my move to New Hampshire. I perused
>
> a few files which I had written and fortuitously came across
>
> a few notes written by me the winter of" 85 "- the information was o=
> n
> =
>
> a diskette and had a log of the medicine I was taking at that time.
> =
>
> The total Sinemet 25/ 100 was 1.6 GRAMS and the total of Parledol=
>
> =
>
> was about 6.0 mg .
>
>
>
> =
>
>
>
> =
>
> =
>
> Statement on effects of Sinemet( 25/ 250 ) combined with Parledol
>
> ( 1985 ) prior to Boston trip
> =
>
>
> " At dinner I felt sick and remained so throughout the night. I am =
> =
>
> =
>
> constipated all the time and can smell those pills wherever I go. Aft=
> er
>
> about an hour's sleep went to hospital and had cast removed from my
>
> ankle broke foot walking down stairs)". =
>
>
>
> Between the years 1984 - 1985 I compiled a total of 5 trips
>
> to the hospital with only slight improvement in my response to
>
> the medicine, the fifth resulting in my being strapped to the bed
>
> in the maximum security room overnight. The hospital was not prepar=
> ed
>
> to handle a patient within my illness as exemplified by one orderly
>
>
>
>
> who screamed at me for not being able to walk up to the desk and tak=
> e
>
> my pill as I done so before. The doctors were at a loss as to what=
>
>
> to do with me as I rejected an attempt to cut down on the pills
>
> ( sinemet 25/100) because of the suffering it caused and I harbored
>
> the dim hope of being able to go back to work if I could walk and
>
> use my arms for most of the day. I wasn 't sleeping or resting and t=
> he
>
> harsh treatment at the hospital had me in a frenzy wherein I had a
>
> difficult time distinguishing between friend or foe.
> =
>
>
>
>
>
>
>
>
> I was sick both mentally and physically and after a =
> =
>
> =
>
> a weeks' stay on the fifth trip to the hospital was suspect
>
> of all doctors and hospital personel. I could not return =
> =
>
> =
>
> home as there weren't people prepared to handle me as I needed =
>
>
> much care to just survive. At this pivotal point in my life my
>
> family agreed to remove me from the local hospital and to help me ge=
> t
>
> to the medical clinic in Boston.
>
> =
>
> I didn't know what was in store for me in Boston but realized
>
> when the nurses kept bringing my pills late, in fact missed a few her=
> e
>
>
> and there creating spells of voracious sweating after supper which w=
> ere
>
> mitigated only night showers. I didn't realize I had been in the =
> =
>
> =
>
> clinic for more than a month but when the nurse pointed out to me th=
> e
>
> entry date in her log. I had many delusions in that time one which n=
> ow =
>
> =
>
> seems a little humorous.
>
>
> The tall metallic linen carriers with the large blue boxes to h=
> ouse =
>
> =
>
> the dirty linen which the orderlies pushed around the hallways; I
> =
>
> believd them to be used for carring out the dead bodies so as to =
> =
>
>
> conceal the identities. I had spells at times where I could only
>
> feel comfortable by sitting or crawling on the floor. The doctors =
>
> =
>
> ( I believed ) were engaged in applied research on human bodies-
>
>
> something akin to concentration camps during WORLD War II -ironic
>
> im that my father was jEWISH and I never got to meet any of his =
>
>
> relatives.
> =
>
>
> As you might have suspected a drug holiday is hardly a vacatio=
> n
>
> trip, so don't take your bathing suit. Leading up to the drug holida=
> y
> =
>
> you are slowly weaned off of pills until your down to zero. The pil=
> l
>
> count was posted on the bulletin board which was visible from my
> =
>
> bed and the gradual decrease didn't bother me although I was like a
>
> log in the bed- immobile. The only time the count bothered me
> =
>
> was when it reached 1/2 sinmet- I thought that the removal of
>
> the last pill implied "it was lights out for me ". I remember my
>
> roommate who had a serious neurological problem from a vehicle
>
> accident saying : " I just look for another sunrise and sunset
>
> each day and thank the Lord I made it through another one".
> =
>
> =
>
> On the positive side , accepting the fact that I was much bet=
> ter
>
> both physically and mentally upon departure from hospital - I recall=
>
> =
>
> some interesting moments which I endeavor to share with the reader, =
> a
>
> so to speak "COMING BACK FROM THE DEAD". I never realized the exte=
> nt
> =
>
> my illness had developed or how influential the medicine had on my
> =
>
> overall performance. Not only did my limp turn into a overall =
> =
>
> =
>
> crippling effect when the medicine wasn't working but my hands were =
> =
> =
>
> =
>
> trembling so I couldn't write my signature. My shoes felt like lead
> =
>
> weights so I took them off whenever possible and my right shoe showed=
>
>
> to be worn out much before the left.The transition decay ( performanc=
> e
>
> decrease over time ) occurred many years prior to the drug holiday.
>
>
> The physical deterioration was pretty well established by sight =
>
> =
>
> but the mental damage I could not assess fully. As alluded to in the=
>
>
> quote about the affects of drugs in "85 ", not only did I smell the
>
> pills but supposedly smelt strange odors in the house emanating
> =
>
> from perhaps the furnace.I could not hold the cards in a bridge game,=
>
>
> in addition lacked concentration on playing and remembering the
>
> cards played,a steady ringing was ever present in my ears, everything=
>
>
> I tasted from a sandwich to an apple seemed to have a medicinal tast=
> e.
>
> I had wavy spells in my eyes along with stroboscopic( flashing of lig=
> ht
>
> like a Disco Hall) effects at times. All my senses were impaired and=
>
> =
>
> it was primarily in the aftermath of the no pill period I started
>
> the transition rise
> =
> =
>
>
> If I had a tape recorder it would have helped but I recall
> =
>
> many significant events.In fairness to the supporting cast( all
> =
>
> doctors,nurses,aids ) my condition was not only brought about by the=
>
> =
>
> tremendous intake of medicine but the progressive nature of the =
> =
>
> =
>
> disease. In trying to combat this disease I slipped into a trap
>
> which can grab even the most diligent of the afflicted. =
>
>
> =
>
> It is relatively easy to increase the amount of medicine
> =
>
> one takes without noticing any side effects because the interval of =
> in=A9
> =
>
> creased dosage is short, but eventually you each a level the human
>
> body cannot tolerate- then your in Trouble ( right here in River Cit=
> y -
>
> with a capital" T " which rhymes with " P " which stands for "POOL=
> ")
>
> It is not easy to decrease the quantity of medicine once you've
> =
>
> reached a steady state wherein you feel comfortable
> =
>
>
> Simply backing off one pill ( smallest Sinemet is 100 mg =
> =
>
> =
>
> might be split in two giving 50 mg ) or 1/2 pill can have significa=
> nt
>
> effect on a day-to day basis, it can also be dangerous.I would neve=
> r
>
> again try on my own to decrease my medicine without seeking out
>
> a professional and in the care of hospital personnel.You only live
>
> once so you might as well play your trump suit!.
>
>
> I intimated previously, I recall certain events which brought ab=
> out
>
> the expression named by me as the transition rise ( increase in
>
> performance over time ).One significant item which was very importan=
> t
>
>
> and which was apparent in the Log of the winter of"85 is that at bes=
> t
>
> I was getting only two-two hour periods of sleep quite often a
>
> some total of two to three hours of sleep.Sleep deprivation can be
> =
>
> a very insidious thing resulting in unexpected falls, napping while =
> =
>
> =
>
> your driving and many neurological impairments. Subsequent to the
>
> drug holiday, I was building up on medicine again but my sleep in =
> =
> =
> =
> =
>
> =
>
> spite of taking about 250 mg of Sinemet was still sparse.
>
> =
>
> One night at 10:00 pm, I remember being given two sleeping and=
>
>
> 75 mg ELAVIL- went out like a light and was awoke by the interns
>
> of whom were on duty.They looked at me and said " What time is it? =
> =
>
> =
>
> I looked at the clock on the wall - "It 7 o'clock. WOW ! " They s=
> aid"
>
> how long did you sleep" ? My reply " 9 hours". I could hardly bel=
> ieve
> =
>
> it. For the first time in about 15 YEARS I sustained a sleep of
>
> 9 hours. This turned the corner for me on my road back.
>
> Once I was getting some sleep my recovery was on its way-this =
> is
>
> not to say there is any miracle cure for Parkinson's Disease becaus=
> e
> =
>
> there isn't;the pills merely give you so many hours of relief which
>
> is a "blessing " in my case. But getting back to statement about
>
> =
>
> "Like Lazarus I rose from the dead " the following episodes are
>
> recalled. I could see the parking garage from my bedroom window
>
> so I was aware of it yet couldn't hear anything resembling car noi=
> se.
>
> One morning as I was eating the ringing had decreased and I distin=
> ctly
> =
>
> heard the resonating sound of a car in the parking lot.
>
>
> One Friday night while I was reading in bed,I could smell the=
>
> =
>
> intoxicating aroma of corn popping. When the nurse came by to check=
> me
>
> I said " Your making popcorn tonight - smells pretty good" . She =
>
> =
>
> replied " We make it every Friday night." I had been there for ove=
> r =
>
>
> two months in the same area and never detected the aroma.
>
> =2E
> Food at this point had little taste to it up to this period =
>
>
> in time but I still managed to eat enough to put on weight.One day a=
> fter =
>
>
> lunch during the 14-day holiday, I was involved in physical therapy
>
> when I suddenly stood up from the wheelchair walked across the floor=
>
>
> and shook a friend's hand. Although I had always responded to
> =
>
> medicine prior to entering the hospital, being on a drug holiday led=
> =
> =
>
> =
>
> to believe a miracle had resulted and when I returned to my room I
>
> was not in one of my depressed moods and called my mother to tell he=
> r
>
> of my ordeal. Subsequently, upon talking to the nurse the truth ca=
> me
>
> to be - a miracle had not occurred but a pill had been mixed in with=
> my
>
> lunch. This didn't bother me-the temporary high was worth it.
>
>
> The halcyon days of gradually performing better were coming to
>
> a close and I knew the transition to a life without medical assistan=
> ts
>
> would take some adjustment but I had survived a breakup of my family=
> ,
>
> a medical retirement from development engineering work, relocation f=
> rom
> =
>
> my friends,and lastly a sequence of hospital visits which ranged fr=
> om
>
> being treated like royalty to the scum of the earth. Most of the rem=
> ain-
> =
>
> ing chapters will dwell on living outside of the hospital which can
> =
>
> be just as traumatic as you have to schedule your good times ( pills=
> -
>
> working ) to maximize your performance ( ability to eat ,dress etc.)=
> =
>
>
> before the efficacy of the medicine runs down.
> =
>
>
> =
>
> CHAPTER II
>
> PILLS, PILLS, PILLS
>
>
> THere seems little doubt that the majority of PD patients respond=
>
>
> to levodopa found in pills ( SINEMET ).The pill Sinemet ( xx / yy ) h=
> as
> =
>
> various strengths with the xx standing for the weight of carbidopa an=
> d =
>
> =
>
> the yy standing for the weight of the levodopa.The pills come in vari=
> ous =
>
>
> sizes (weight) with typical values 1OO, 2OO, and 250 mg ( 0.001 grams=
> ).
>
> =
>
> for example: Sinmet 25/100 ( comnmon color yellow )
>
> has 25mg of carbidopa ( c )
>
> and 100 mg of levodopa ( l )
>
> percentage of c/l =3D 25 %
>
> another example Sinmet 50/200 200mg CR ( common color light oran=
> ge)
>
> has 50 mg of carbidopa ( c )
>
> has 200 mg of levodopa ( l )
>
> percentage of c/l =3D 25 %
>
> CR =3D Controlled reaction
>
> The c/l RATIO determines generally how quickly and the quantity ofl=
> ev-
>
> odopa which gets to the brain. For the older blue pill Sinemet 25/25=
> 0 it
>
> took in my own case( weight about 165 lbs.)about 20 minutes to"kick =
> in"
>
> assuming no onset of flu or variation from normal health. The Sinmwe=
> t
> .
> 25/100 for my present weight takes about 45 minutes for effectivenes=
> s.The
>
> Sinemet 50/200 CR take about 3 hours to peak up in my case.
> =
>
> There is no certainty that the the Sinemet will work any given d=
> ay
>
> but it seems to be true that if the pills are not working well one d=
> ay
>
> the next day they will. Some of the older versions of the pill are
>
> SINEMET ( 10/100 ) blue pill ,Sinemet ( 25 /250 ) blue pill and
>
> available years ago were stricly Carbidopa pills which supplemented t=
> he
>
> blue pills ( c/l =3D 10 % ).At my age and being 25 years into the dis=
> ease
>
> the tendency is to take more Sinemet to add the dopamine to the area =
> of
>
> the brain where it is lacking but this can backfire on the patient
>
> as once he get over about 1000 mgm ( varies with individuals ). Over =
> a
> =
>
> period of about two months you could probably get away with an
>
> increase of about 2 Sinmet 25/100 pills with increased performance;
>
> but after about 6 months the settling value might be two large
>
> and the performance will go down drastically even if you take
>
> more pills. It is very difficult to determine for the individual
>
> or his neurologist the correct level to take but the number 1000 mgs
>
> is a psychological barrier planted in my mind. One point is
>
> to be made,if your smelling strange smells day to day or food
>
> which you normally eats tastes sour or taste like medicine your
>
> probably overdosed. =
>
> =
>
> =
>
> I have tabulated my present menu of daily pills to give one a
>
> comparison between his menu and mine ( see FIG. 1 )
> =
>
>
> FIGURE I
> -------------------------------------------------------------------------=
> -- =
>
> Pill Schedule of W. J . Brenner
> Disease - Parkinson's-
> -------------------------------------------------------------------------=
> ---
>
> 11-11:30 PM 1 SINEMET 50/200 CR
> -------------------------------------------------------------------------=
> ---- -------------------------------------------------------------=
> ------------ =
>
>
> 3:00 AM 1 SINMET 50/200 CR
> -------------------------------------------------------------------------=
> ----
> =
>
> 6:00 AM 1-1/2 SINEMET 25/100
>
> 1- 1/2 Permax .25 mg
> -------------------------------------------------------------------------=
> ---
> =2E 1 SINEMET 25/100 =
> =
>
>
> 8:30-1O.O AM 1/2 ELDYPRL , 1 SYMMETREL( 100=
> MG)
> -------------------------------------------------------------------------=
> ---------------------------------------------------------
>
> 12:00 PM 1 PERMAX, 1 SINEMET 25/100 =
> 1 SINEMET 100 MG
> -------------------------------------------------------------------------=
> --
>
> 2:00 PM 1 /2 ELDYPRL, 1 SINEMET 25/100
>
> ---------------------------------------------------------------------
>
> 4:00 PM 1-1/2 PERMAX .25 MG ,1 SINEMET 25/1=
> 00
> ------------------------------------------------------------=A9=A9=A9=A9=A9=
> =A9=A9=A9=A9=A9=A9=A9=A9=A9=A9 =
>
> 1 SINEMET 25/100 CR
>
> 5:30 PM 1/2 SINMET 25/100
> -------------------------------------------------------------------------=
> --
> 7:30-7:45 PM 2-25 MG AMYTRPLN, 1 -ATIVAN 10 MG
> =
>
> 1 PERMAX .25 MG
> -------------------------------------------------------------------------=
> ----
>
>
> By now you can see why the chapter is so named. Not being a
>
> neurologist,I won't dabble in the usual language for expressing
>
> the type of pill and its reaction in the stem of the brain - "I NEVE=
> R
> =
>
> PROMISED YOU A ROSE GARDEN ". I just reflect the results as seen
>
> through the eyes of a patient - devoid of any experience in the medi=
> cal
>
> field.These are not the only types of pills available for treatment =
> of
>
> PD but I rejected some type medicine because they were for cures fo=
> r
>
> symtoms of less importance.It should be emphasized that the human bo=
> dy in
>
> time becomes less sensitive to many drugs and the overall response o=
> f
> =
>
> the individual lessens- this is perhaps the time to try one of the =
> =
>
> =
>
> other types of medicine . A list of the drugs with some comments
>
> is as follows:
>
> Sinemet 50 / 200 CR -This is a pretty good wallop and if it
>
> is not controlled reaction ( CR ) you'd better have a little=
>
>
> ice cream with it.I can handle 200 mg of CR on practically
>
> an empty stomach because the pill is so slow getting
>
> to the blood stream( weight 185 lbs).It is a pretty good
>
> pill to slept on but you'd take perhaps a half a Sinemet 25/=
> 100
>
> 100 in between two CR 200 to allow yourself a time for
>
> a visit to the bathroom .The high in taking CR is not
>
> always high enough to complete necessary functions.
>
> Sinmet 25/100 - This is the most beneficial of all
>
> the pills I take .Whenever I get to an extreme condition whe=
> re
>
> I am fearful of castastrophe ( too stiff to move at all ) I
>
> take 1/2 of this pill.One morning after completing my duties=
>
>
> in the bathroom,I suddenly stiffened up and eventually found=
>
>
> myself on the floor face down.I called for my help and was =
> =
>
>
> given 1/2 a pill ( my instructions )and was assisted to
>
> the stool.Within a half an hour from thence,I was up and
>
> walking.These sudden bouts with " freezing in place" can
>
> be brought on by merely taking a hot shower and once expos-
>
> ed to the room temperature you lock- up.
>
>
> Eldepryl- Generally, when you take a new pill for the first tim=
> e
> '
> the body is more sensitive to it. This appeared to be the case =
>
> =
>
> here. Hearsay would classify it similiar to an LSD high as =
>
> =
>
> within about a half-hour the room seemed brighter and my mood =
>
> =
>
> swung from gloomy to euphoric. I was very reckless and so overcharg=
> ed =
>
>
> I walked to the local store a half-dozen times. It seems as though w=
> hen
>
> walking I was using leg muscles which hadn't been activated for
>
> many years. After after continued use of the pill with time the
>
> effect diminished and taking two of the pills ( maximum is two )
>
> caused increased shaking in my hands - not being able to pull
>
> up my pants. In conjunction with tbe other medicines I believe it
>
> still is a good drug to supplement the Sinemet.
>
> Symmetrel ( 100 mg ) - This is a pill originally developed
>
> for combating the flu and I believe it does because
>
> since taking it ( MAXIMUM 2 TABLETS ) I can't recall
>
> ever having the flu once I started the pill.Even though
>
> many neurologists don't have much faith in it's contribut-
>
> ion I have always gone back to it in spite of being weened
>
> off it twice during hospital visits.I remember one prom-
>
> inant midwestern neurologist words " Don't quite the
>
> symmetrel it makes the connections ".
>
>
> Permax (.25 mg ) - When I first started using this drug I
>
> had just entered the hospital complaining of significant
>
> down time.The introduction of this medicine in conjuction
>
> with Sinemet at first greatly enhanced my " on " time
>
> although like most medicine it wanes with time. Overall
>
> I would do poorer without it.
>
>
> Elavil ( 25 mg ) - This was the wonder pill which recaptured my=
>
>
> my sleep during the hospital in "85". It is a small green pi=
> ll
>
> and can be quite harsh on the throat if you don't swallow
>
> it quickley.It contines to help my feet from bending and
>
> quivering allowing me to get some sleep ( approximately
>
> two hours ).
>
> Ativan - A small white sleeping pill which is taken before
>
> bedtime.It can only be used in small quantities.
> =
>
> The cost of taking all these pills is substantial as well as being=
>
>
> a nuisance to contend with the taking of the pills throughout the
>
> day. In Figure II is he breakdown of the cost of the pills per
>
> each interval :
>
>
> Pills/day S 25/100 - 7 S 50/200 - 2 EL .25 - 1
>
>
>
> PMX - 4 SYM -1 ELV -2 ATV -1
>
>
>
> Formulas for FIG.II
>
>
>
> * MULTIPLICATION # =3D NUMBER
>
>
>
> DAYLY =3D COST/PILL * ## OF PILLS /DAY
>
> =
>
> MONTHLY =3D DAYLY * 30
>
>
> YEARLY =3D MONTHLY * 12
> =
>
>
>
> FIGURE II
>
> COST OF MEDICINE ( 1994 )
>
>
> NAME RETAIL QTY COST/PILL DAYLY MON. YEAR
>
>
> SINEMET 25/100 $ 59.85 100 60 c $ 4.20 $ 126. $ 1512
>
> SINEMET 50/200 $112.69 100 $ 1.12 $ 2.24 $ 67.20 $ 806.4=
>
>
> ELDRYPL ( 5 MG ) $ 58.55 30 $ 1.95 $ 1.95 $ 58.50 $ 702.O=
>
>
> =
>
> PERMAX ( .25 MG ) $ 66.21 100 $ 67 c $2.08 $ 79.2 $ 950.4=
>
>
> SYMTRL ( 100 MG ) $ 24.85 100 $ 25 c 25 c $ 14.4 $ 90.0=
>
>
> ELVL ( 25MG ) $ 3.99 60 67 c $ 1.44 $ 4.2 $ 50.4=
>
>
> ATVN ( 1 MG ) $ 4.96 30 17 c 17 c $ 5.10 $ 61.2=
>
> -------------------------------------------------------------------------=
> ----
> $ 11.63 $ 347.22 $ 3972=
> =2E5
>
>
> One might question the exhaustive quantity of pills taken but I =
> can
>
> can justify each and every one consumed. I am a slave to the clock a=
> s
> =
>
>
> most people with chronic ailments are -if I miss a pill my body lets=
>
>
> me know about it.The timing of the pills is important although many
>
> people snub their noses at the thought of constantly taking pills. I=
>
>
> recall talking to an older woman at an elder care center.She suffere=
> d
>
> from a mumber of ailments heart condition , PD, and other conditions=
>
>
> generally associated with age.She held in her hand a fistfull of pi=
> lls
>
> and was about to take them when I questioned her about the quantity.=
>
>
> She explained that this one was for PD,another for heart conditi=
> ons
>
> and so forth so I said " How do you know whether any one pill does t=
> he
>
> job its suppoed to if you take them all simultaneously? ". She repl=
> ied
> =
>
> " I can't mbe bothered with taking pills all day so I take them al=
> l
>
> at once ."
> =
>
> The point to be made from the anecdote is that if you are goimg=
>
>
> to battle an illness you must experiment,in conjunction with the
>
> doctor's orders, on the medicine to achieve the optimum response. Yo=
> u
>
> should read everything you can decipher ( don't bother with articles=
>
>
> written for neurologists) and evaluate it relative to your own
>
> situation. When your prescribed a new medicine if the vial contains
>
> directions read them if you can - remember it's your body and the
> =
>
> only one you'll ever have. Also with a vial of pills comes instructi=
> ons
>
> on various factors which you should be aware- do take the time to re=
> ad
>
> these as you might get somes tips which will ease your burden.Your
>
> local pharmacist be a ready source of information so use the infor-
>
> ion which can be yours for no greater price.
>
>
> Your pills are vital to you- the long sufferers of PD and I would
>
> recommend you carry the pills around with you in a plastic canister=
>
> =
>
> around your neck. This way you won't be facing the thought "Oh God,
>
> I forgot my pills and the pharmacy is closed today or not readily ac=
> -
>
> essable ! In my case ,I can go so to speak " off " in a matter of
>
> seconds and am not capable of even holding the water to my lips with=
> -
>
> out spilling it. There have been times where desparation has set in =
> and
>
> =
>
> I' ve taken the pill with nothing to wash it down. I recall going to=
>
>
> bed one nite with a symmetrel capsule stuck in my throat and when I
>
> awoke it apparently dissolved in my throat and went down the hatch.
>
>
> One other tip for surviving the perils associated with PD - cou=
> nt
>
> and lay out the pills you will be using for that day.Either carry th=
> em
> =
>
>
> aAround your neck as mentioned or put them in a container away from=
> the
>
> grasp of little hands.These pills are very strong and could easily
>
> kill a small child if taken like they were M & M candy. Be sure to
>
> take your pills on time and if after downing the pill you are not su=
> re
>
> you took it go back and count how many pills you have left -if the
>
> count indicates you've taken the pill assume its gone and be a littl=
> e
> =
>
> careful during the next interval ( holding a 1/2 pill in reserve
>
> should you have made a mistake). Should you lock -up and start
>
> oscillating ( skaking ) severely, take the 1/2 half pill.I reiterate=
> -
>
> know where you are with respect to the pill schedule at all times
>
> and be sure you`ve got a spare with you in case of an emergency.
>
> Let's refer back to FIG.II labeled "Cost of Medicine".It is
>
> unfortunate that the cost of pills has to be dealt with when it come=
> s to
>
> your health but the pharmacist doesn't give away the medicine.Cost i=
> s
>
> always a factor in every endeavor The first pill to be investigated
>
> is the Sinemet 25/100 since it is the most costly for the patient
>
> arly basis.It's retail value is about 60c/pill and to
>
> my recollection it was about the same price close to twenty years ag=
> o.
>
> The next pill be scrutinized is the Sinemet 25/200 ;the only commen=
> t
>
> I shall make is that the price of the 200 MG CR is about twice that
>
> of the 100 MG Regular although the ingredients and manufacturing cos=
> ts
> =
>
> are probably the same. The worst travesty of the cost of PD medicine=
>
>
> and it now being sold at the ( Hungary ) pharmaceutical stores at
> =
>
> the equivalent value of 9 cents - the retail price in the U.S. is
>
> about $ 1.95. If this situation existed in a federally funded progra=
> m
>
> I would recomnend it for the "Golden Fleece Award ".
>
> In the semiconductor ( devices which go into your TVs' ) industr=
> y
>
> when a chip is made for the first time the retail cost must reflect =
> the
>
> operating costs ( design,etc.) to build the initial units ( chip
>
> might cost ## dollars per week depending on complexity );
>
> whereas when the chip is well developed and the only thing standing i=
> n
>
> the way is the production costs( personal training,volume cost per it=
> em)
>
> When the chips are made in millions per week the price comes way
>
> down perhaps in value to # cents range.The intensity of the competiti=
> on
>
> has lead to the failure of a number of semiconductor companies-why
>
> isn't the same true for the Pharmaceutical Companies?
>
> =
>
>
> =
>
> CHAPTER II
>
> PILLS, PILLS, PILLS
>
>
> THere seems little doubt that the majority of PD patients respond=
>
>
> to levodopa found in pills ( SINEMET ).The pill Sinemet ( xx / yy ) h=
> as
> =
>
> various strengths with the xx standing for the weight of carbidopa an=
> d =
>
> =
>
> the yy standing for the weight of the levodopa.The pills come in vari=
> ous =
>
>
> sizes (weight) with typical values 1OO, 2OO, and 250 mg ( 0.001 grams=
> ).
>
> =
>
> for example: Sinmet 25/100 ( comnmon color yellow )
>
> has 25mg of carbidopa ( c )
>
> and 100 mg of levodopa ( l )
>
> percentage of c/l =3D 25 %
>
> another example Sinmet 50/200 200mg CR ( common color light oran=
> ge)
>
> has 50 mg of carbidopa ( c )
>
> has 200 mg of levodopa ( l )
>
> percentage of c/l =3D 25 %
>
> CR =3D Controlled reaction
>
> The c/l RATIO determines generally how quickly and the quantity ofl=
> ev-
>
> odopa which gets to the brain. For the older blue pill Sinemet 25/25=
> 0 it
>
> took in my own case( weight about 165 lbs.)about 20 minutes to"kick =
> in"
>
> assuming no onset of flu or variation from normal health. The Sinmwe=
> t
> .
> 25/100 for my present weight takes about 45 minutes for effectivenes=
> s.The
>
> Sinemet 50/200 CR take about 3 hours to peak up in my case.
> =
>
> There is no certainty that the the Sinemet will work any given d=
> ay
>
> but it seems to be true that if the pills are not working well one d=
> ay
>
> the next day they will. Some of the older versions of the pill are
>
> SINEMET ( 10/100 ) blue pill ,Sinemet ( 25 /250 ) blue pill and
>
> available years ago were stricly Carbidopa pills which supplemented t=
> he
>
> blue pills ( c/l =3D 10 % ).At my age and being 25 years into the dis=
> ease
>
> the tendency is to take more Sinemet to add the dopamine to the area =
> of
>
> the brain where it is lacking but this can backfire on the patient
>
> as once he get over about 1000 mgm ( varies with individuals ). Over =
> a
> =
>
> period of about two months you could probably get away with an
>
> increase of about 2 Sinmet 25/100 pills with increased performance;
>
> but after about 6 months the settling value might be two large
>
> and the performance will go down drastically even if you take
>
> more pills. It is very difficult to determine for the individual
>
> or his neurologist the correct level to take but the number 1000 mgs
>
> is a psychological barrier planted in my mind. One point is
>
> to be made,if your smelling strange smells day to day or food
>
> which you normally eats tastes sour or taste like medicine your
>
> probably overdosed. =
>
>
>
> I have tabulated my present menu of daily pills to give one a
>
> comparison between his menu and mine ( see FIG. 1 )
> =
>
>
> FIGURE I
> -------------------------------------------------------------------------=
> -- =
>
> Pill Schedule of W. J . Brenner
> Disease - Parkinson's-
> -------------------------------------------------------------------------=
> ---
>
> 11-11:30 PM 1 SINEMET 50/200 CR
> -------------------------------------------------------------------------=
> ---- -------------------------------------------------------------=
> ------------ =
>
>
> 3:00 AM 1 SINMET 50/200 CR
> -------------------------------------------------------------------------=
> ----
> =
>
> 6:00 AM 1-1/2 SINEMET 25/100
>
> 1- 1/2 Permax .25 mg
> -------------------------------------------------------------------------=
> ---
> =2E 1 SINEMET 25/100 =
> =
>
>
> 8:30-1O.O AM 1/2 ELDYPRL , 1 SYMMETREL( 100=
> MG)
> -------------------------------------------------------------------------=
> ---------------------------------------------------------
>
> 12:00 PM 1 PERMAX, 1 SINEMET 25/100 =
> 1 SINEMET 100 MG
> -------------------------------------------------------------------------=
> --
>
> 2:00 PM 1 /2 ELDYPRL, 1 SINEMET 25/100
>
> ---------------------------------------------------------------------
>
> 4:00 PM 1-1/2 PERMAX .25 MG ,1 SINEMET 25/1=
> 00
> ------------------------------------------------------------=A9=A9=A9=A9=A9=
> =A9=A9=A9=A9=A9=A9=A9=A9=A9=A9 =
>
> 1 SINEMET 25/100 CR
>
> 5:30 PM 1/2 SINMET 25/100
> -------------------------------------------------------------------------=
> --
> 7:30-7:45 PM 2-25 MG AMYTRPLN, 1 -ATIVAN 10 MG
> =
>
> 1 PERMAX .25 MG
> -------------------------------------------------------------------------=
> ----
>
>
> By now you can see why the chapter is so named. Not being a
>
> neurologist,I won't dabble in the usual language for expressing
>
> the type of pill and its reaction in the stem of the brain - "I NEVE=
> R
> =
>
> PROMISED YOU A ROSE GARDEN ". I just reflect the results as seen
>
> through the eyes of a patient - devoid of any experience in the medi=
> cal
>
> field.These are not the only types of pills available for treatment =
> of
>
> PD but I rejected some type medicine because they were for cures fo=
> r
>
> symtoms of less importance.It should be emphasized that the human bo=
> dy in
>
> time becomes less sensitive to many drugs and the overall response o=
> f
> =
>
> the individual lessens- this is perhaps the time to try one of the =
> =
>
> =
>
> other types of medicine . A list of the drugs with some comments
>
> is as follows:
>
> Sinemet 50 / 200 CR -This is a pretty good wallop and if it
>
> is not controlled reaction ( CR ) you'd better have a little=
>
>
> ice cream with it.I can handle 200 mg of CR on practically
>
> an empty stomach because the pill is so slow getting
>
> to the blood stream( weight 185 lbs).It is a pretty good
>
> pill to slept on but you'd take perhaps a half a Sinemet 25/=
> 100
>
> 100 in between two CR 200 to allow yourself a time for
>
> a visit to the bathroom .The high in taking CR is not
>
> always high enough to complete necessary functions.
>
>
>
> Sinmet 25/100 - This is the most beneficial of all
>
> the pills I take .Whenever I get to an extreme condition whe=
> re
>
> I am fearful of castastrophe ( too stiff to move at all ) I
>
> take 1/2 of this pill.One morning after completing my duties=
>
>
> in the bathroom,I suddenly stiffened up and eventually found=
>
>
> myself on the floor face down.I called for my help and was =
> =
>
>
> given 1/2 a pill ( my instructions )and was assisted to
>
> the stool.Within a half an hour from thence,I was up and
>
> walking.These sudden bouts with " freezing in place" can
>
> be brought on by merely taking a hot shower and once expos-
>
> ed to the room temperature you lock- up.
>
>
> Eldepryl- Generally, when you take a new pill for the first tim=
> e
> '
> the body is more sensitive to it. This appeared to be the case =
>
> =
>
> here. Hearsay would classify it similiar to an LSD high as =
>
> =
>
> within about a half-hour the room seemed brighter and my mood =
>
> =
>
> swung from gloomy to euphoric. I was very reckless and so overcharg=
> ed =
>
>
> I walked to the local store a half-dozen times. It seems as though w=
> hen
>
> walking I was using leg muscles which hadn't been activated for
>
> many years. After after continued use of the pill with time the
>
> effect diminished and taking two of the pills ( maximum is two )
>
> caused increased shaking in my hands - not being able to pull
>
> up my pants. In conjunction with tbe other medicines I believe it
>
> still is a good drug to supplement the Sinemet.
>
> Symmetrel ( 100 mg ) - This is a pill originally developed
>
> for combating the flu and I believe it does because
>
> since taking it ( MAXIMUM 2 TABLETS ) I can't recall
>
> ever having the flu once I started the pill.Even though
>
> many neurologists don't have much faith in it's contribut-
>
> ion I have always gone back to it in spite of being weened
>
> off it twice during hospital visits.I remember one prom-
>
> inant midwestern neurologist words " Don't quit the
>
> symmetrel it makes the connections ".
>
>
> Permax (.25 mg ) - When I first started using this drug I
>
> had just entered the hospital complaining of significant
>
> down time.The introduction of this medicine in conjuction
>
> with Sinemet at first greatly enhanced my " on " time
>
> although like most medicine it wanes with time. Overall
>
> I would do poorer without it.
>
>
> Elavil ( 25 mg ) - This was the wonder pill which recaptured my=
>
>
> my sleep during the hospital in "85". It is a small green pi=
> ll
>
> and can be quite harsh on the throat if you don't swallow
>
> it quickley.It contines to help my feet from bending and
>
> quivering allowing me to get some sleep ( approximately
>
> two hours ).
>
>
> Ativan - A small white sleeping pill which is taken before
>
> bedtime.It can only be used in small quantities.
> =
>
> The cost of taking all these pills is substantial as well as being=
>
>
> a nuisance to contend with the taking of the pills throughout the
>
> day. In Figure II is he breakdown of the cost of the pills per
>
> each interval :
>
>
> Pills/day S 25/100 - 7 S 50/200 - 2 EL .25 - 1
>
>
>
> PMX - 4 SYM -1 ELV -2 ATV -1
>
>
>
> Formulas for FIG.II
>
>
>
> * MULTIPLICATION # =3D NUMBER
>
>
>
> DAYLY =3D COST/PILL * ## OF PILLS /DAY
>
> MONTHLY =3D DAYLY * 30
>
>
> YEARLY =3D MONTHLY * 12
> =
>
>
>
> FIGURE II
>
> COST OF MEDICINE ( 1994 )
>
>
> NAME RETAIL QTY COST/PILL DAYLY MON. YEAR
>
>
> SINEMET 25/100 $ 59.85 100 60 c $ 4.20 $ 126. $ 1512
>
> SINEMET 50/200 $112.69 100 $ 1.12 $ 2.24 $ 67.20 $ 806.4=
>
>
> ELDRYPL ( 5 MG ) $ 58.55 30 $ 1.95 $ 1.95 $ 58.50 $ 702.O=
>
>
> =
>
> PERMAX ( .25 MG ) $ 66.21 100 $ 67 c $2.08 $ 79.2 $ 950.4=
>
>
> SYMTRL ( 100 MG ) $ 24.85 100 $ 25 c 25 c $ 14.4 $ 90.0=
>
>
> ELVL ( 25MG ) $ 3.99 60 67 c $ 1.44 $ 4.2 $ 50.4=
>
>
> ATVN ( 1 MG ) $ 4.96 30 17 c 17 c $ 5.10 $ 61.2=
>
> -------------------------------------------------------------------------=
> ----
> $ 11.63 $ 347.22 $ 3972=
> =2E5
>
>
> One might question the exhaustive quantity of pills taken but I =
> can
>
> can justify each and every one consumed. I am a slave to the clock a=
> s
> =
>
> most people with chronic ailments are -if I miss a pill my body lets=
>
>
> me know about it.The timing of the pills is important although many
>
> people snub their noses at the thought of constantly taking pills. I=
>
>
> recall talking to an older woman at an elder care center.She suffere=
> d
>
> from a mumber of ailments heart condition , PD, and other conditions=
>
>
> generally associated with age.She held in her hand a fistfull of pi=
> lls
>
> and was about to take them when I questioned her about the quantity.=
>
>
> She explained that this one was for PD,another for heart conditi=
> ons
>
> and so forth so I said " How do you know whether any one pill does t=
> he
>
> job its suppoed to if you take them all simultaneously? ". She repl=
> ied
> =
>
> " I can't be bothered with taking pills all day so I take them all=
>
>
> at once ."
> =
>
> The point to be made from the anecdote is that if you are goimg=
>
>
> to battle an illness you must experiment,in conjunction with the
>
> doctor's orders, on the medicine to achieve the optimum response. Yo=
> u
>
> should read everything you can decipher ( don't bother with articles=
>
>
> written for neurologists) and evaluate it relative to your own
>
> situation. When your prescribed a new medicine if the vial contains
>
> directions read them if you can - remember it's your body and the
> =
>
> only one you'll ever have. Also with a vial of pills comes instructi=
> ons
>
> on various factors which you should be aware- do take the time to re=
> ad
>
> these as you might get somes tips which will ease your burden.Your
>
> local pharmacist be a ready source of information so use the infor-
>
> ion which can be yours for no greater price.
>
> Your pills are vital to you- the long sufferers of PD and I would
>
> recommend you carry the pills around with you in a plastic canister=
>
> =
>
> around your neck. This way you won't be facing the thought "Oh God,
>
> I forgot my pills and the pharmacy is closed today or not readily ac=
> -
>
> essable ! In my case ,I can go so to speak " off " in a matter of
>
> seconds and am not capable of even holding the water to my lips with=
> -
>
> out spilling it. There have been times where desparation has set in =
> and
>
> I' ve taken the pill with nothing to wash it down. I recall going =
> to
>
> bed one nite with a symmetrel capsule stuck in my throat and when I
>
> awoke it apparently dissolved in my throat and went down the hatch.
>
> One other tip for surviving the perils associated with PD - cou=
> nt
>
> and lay out the pills you will be using for that day.Either carry th=
> em
> =
>
> aAround your neck as mentioned or put them in a container away from=
> the
>
> grasp of little hands.These pills are very strong and could easily
>
> kill a small child if taken like they were M & M candy. Be sure to
>
> take your pills on time and if after downing the pill you are not su=
> re
>
> you took it go back and count how many pills you have left -if the
>
> count indicates you've taken the pill assume its gone and be a littl=
> e
> =
>
> careful during the next interval ( holding a 1/2 pill in reserve
>
> should you have made a mistake). Should you lock -up and start
>
> oscillating ( skaking ) severely, take the 1/2 half pill.I reiterate=
> -
>
> know where you are with respect to the pill schedule at all times
>
> and be sure you`ve got a spare with you in case of an emergency.
>
> Let's refer back to FIG.II labeled "Cost of Medicine".It is
>
> unfortunate that the cost of pills has to be dealt with when it come=
> s to
>
> your health but the pharmacist doesn't give away the medicine.Cost i=
> s
>
> always a factor in every endeavor The first pill to be investigated
>
> is the Sinemet 25/100 since it is the most costly for the patient
>
> arly basis.It's retail value is about 60c/pill and to
>
> my recollection it was about the same price close to twenty years ag=
> o.
>
> The next pill be scrutinized is the Sinemet 25/200 ;the only commen=
> t
>
> I shall make is that the price of the 200 MG CR is about twice that
>
> of the 100 MG Regular although the ingredients and manufacturing cos=
> ts
> =
>
> are probably the same. The worst travesty of the cost of PD medicine=
>
>
> and it now being sold at the ( Hungary ) pharmaceutical stores at
> =
>
> the equivalent value of 9 cents - the retail price in the U.S. is
>
> about $ 1.95. If this situation existed in a federally funded progra=
> m
>
> I would recomnend it for the "Golden Fleece Award ".
>
>
> In the semiconductor ( devices which go into your TVs' ) industr=
> y
>
> when a chip is made for the first time the retail cost must reflect =
> the
>
> operating costs ( design,etc.) to build the initial units ( chip
>
> might cost ## dollars per week depending on complexity );
>
> whereas when the chip is well developed and the only thing standing i=
> n
>
> the way is the production costs( personal training,volume cost per it=
> em)
>
> When the chips are made in millions per week the price comes way
>
> down perhaps in value to # cents range.The intensity of the competiti=
> on
>
> has lead to the failure of a number of semiconductor companies-why
>
> isn't the same true for the Pharmaceutical Companies?
>
>
>
> CHAPTER IV
>
> DO'S AND DON'T ( S )
>
> =
>
> As a person having had PD's for a large amount of years I can
>
> relate to others with complaints about the dibilitating effects of
>
> PD or even somewhat with other ailments similar in their manifestation=
> s.
>
> People with a lack of understanding of the disease can do a lot of har=
> m
>
> to a PD sufferer by intimidation and putting added stress on the victi=
> m.
>
> PD it must be remembered is a neuorological disease not a physical
>
> deterioration of the muscles in the body.This chapter will address the=
>
>
> peculiar traits associated with PD and the remedy to alleviate the
>
> suffering by educating the public on the subject.Before launching
>
> our statement about the plus and minus of certain characteristics a =
>
>
> caveat is in order.
>
> Although the props,tricks,pill- menu and the do's and don't's
>
> addressed previously are beneficial in my case,they might not be
>
> as applicable in each case as the individual is unique with his
>
> own parameters of weight ,metabolism and so forth.The suggestions
>
> should be taken in the frame in which they're given -if just one or
>
> two things help out,I'm satisfied-my conscience is clear.
>
> Also most of the techniques are not my invention, over a span
>
> of twenty five years these handy ways to overcome problems have been a=
> p-
>
> plied to me with success.It should pointed out there are still many di=
> ff-
>
> erent schools of thought on the proper methods to mitigate the sufferi=
> ng
> =
>
> encountered by the patient, at least today he/she is not put in a corn=
> er =
>
>
> of a mental institution and left to one's own resources.
> =
>
> =
>
> Concommitant with the explosion in technology over the last 25 yr=
> s.
>
> has come the MRI ( Magnetic Resonance Interferometer) which takes slid=
> es
>
> at various depths of the brain, the CAT scan which gives sort of a map=
>
> =
>
> of the surface and an assortment of new medicines. Data based systems
>
> via the computer has made accessable a plethora of information from al=
> l
>
> over the globe. If the patient just hangs in there long enough
>
> a better cure will come.
>
>
> The question repeatedly comes up with regards to exercise as
>
> many health buffs in their eagerness to lend a hand in circumventing
>
> the physical signs of deterioration will recommend many exercises to
>
> follow- which for the majority of the population a routine exercise
>
> program is a plus for the patient.For the long time sufferer of PD
>
> I say " Forget it! " when your in the "off "state.The connections of
>
> nerve centers is just not there so the output you get is a minimal
>
> amount which does little for the patient.I recall an anecdote taken
>
> from one of the periodic issues of a PD society in which at a confere=
> nce
>
> =
>
> of neurologists one doctor was expounding the virtues of exercise
>
> for PD patients.One long suffering man in the audience rose and spoke=
>
>
> after receiving the floor and said "Doctor I wish upon you one week o=
> f =
>
> =
>
> PD !"
>
>
> I agree wholeheartedly this opinion as I've struggled with it
> =
>
> myself.In the morning I get up early and get in my share of physical
>
> activity of walking with a few neck and arm exercises.The neck exerci=
> ses
>
> are mearly a turning of the head both side ways and up and down.It ca=
> n
>
> be a little hazardous if you dont watch your steps.This might not
>
> seem like much but I've exercised in the morning for close to thirty
>
> years and the important thing is to keep a program you can live with.
>
> The mornings are my best times as I have sort of an unrestricted
>
> three hours during which I can map out my day and prepare for any
>
> exigencies.
>
>
>
> Controlling the food you eat in the form of a diet could well b=
> e
>
> a significant factor in your overall performance but this is a
>
> lifetime commitment and requires somebody such as a spouse to cook a=
> nd
>
> and be on the alert for certain foods which are necessary.The PD
>
> patient hasn't the "on" time to cope wsith a full fledged diet as he
>
> /she must use the good time with other commitments.I've been to many
>
> neurologists over the years and have never had a diet recommended to =
> me.
>
> The one thing I can say about a diet is don't drink alcohol.Some of t=
> he
>
> drugs used in treating PD warn about alcohol use with the medicine
>
> particularly ELAVIL( AMITRIIPTYLINED ).I recall one visit to my
>
> neurologist in BOSTON,after which my son and I went out to an Italian=
>
>
> restaurant to eat. I new some of the labels on my medicine warned
>
> the user about consumption of alcohol but I DISREGARDED the warning
>
> as popycock and indulged myself in wine.Everything went hunkydory
>
> up to about 12:00 AM when I awoke from a dead sleep and discovered
>
> that I could not move a muscle - after a waiting period my body
>
> gained control again. Later one day I was reading a newspaper article=
>
>
> alluding to the fact that alcohol and ELAVIL DON'T MIX it can even le=
> ad
>
> to death.This was a very sobering statement for me.
>
>
> PD patients essentially have to learn to walk again similar to
>
> when they were a child when the medicine is't working.The patient
>
> has to concentrate on picking up his foot to step as the PD patient
>
> tends to scuff his foot when set in motion.Once in motion he /she
>
> must keep their mind on what they're doing or an accident can
>
> easily occur.If you are not assisting the patient do not shout or
>
> try to have conversation with the patient or he /she might freeze
>
> up giving the assistant a much heavier load. For prelonged walks the
>
> patient would probably do well to walk behind a medium weight
>
> wheelchair which he /she can push themselves.A PD patient requires
>
> the caregiver to be very understanding and sympathetic with the
>
> patient because although moving quite slow he is moving the fastest
>
> his/hers body will allow.It is for the caretaker to remember to use
>
> whatever technique possible which utilize the muscle-coodination
>
> of the patient without endangering him/her.
>
>
> The room furniture was not considered a "prop " as such ;but it
>
> should be carefully laid out to accommodate the patient if he/she
>
> spends much time in a partucular place.To a patient,chairs without
>
> arms are about as useful as rocking chairs - get rid of them where
>
> possible.A good steel cafeteria chair with arms is about the best
>
> chair to have around.Although not aesthetically pleasing the firm
>
> arms and legs on the chair are easy to grip and push yourself
>
> out of the chair.
>
>
> If you can't arise out a soft chair and you have somebody to assis=
> t
>
> you the following technique might be in order.
>
>
> First-off relax and only let the caregiver assist you.
>
> The caregiver should stand in front of the seated patient
>
> ( face to face ) and hold hands in a cup fashion .
>
> When the caregiver starts the count the patient-caretaker
>
> should swing their arms to and fro outward from the bodies.
>
> This swing is done three times upon which the caregiver
>
> pulls the patient who upon the count of three must anticipate
>
> the rise from the chair to be successfull.
>
> The method seems difficult but you when you see it done successfully
>
> will be surprised.My mother ( 4'11'',approx . 115 lbs ) did it up
>
> into her eighties.
>
>
>
>
>
> CHAPTER V
>
>
> THE PERSONAL TOUCH
>
> The first chapter dealt with more of the struggle I endured while=
>
>
> being over-dosed with pills while the remaining chapters involved
>
> more objective matters which explained of some the care needed to han=
> dle
>
> the PD patient and numerous other details of daily living subsequent t=
> o
>
> the hospital visit ( 85").There appears to be a dichotomy in the
>
> subject even though it is more or less in chronological order. There
>
> is a story here which underlies the entire book-I saved the punch
>
> line for the closing chaper.
>
> I recall a conversation with my room-mate in which I was lamenting=
>
>
> about harsh treatment I received at the previous hospital not only
>
> physical but mental. After spending a night looking up at the ceiling
>
> and cursing the people who put me there, the following day I had to en=
> dure
>
> other humiliating scenes. When I walked by the receiving desk the
>
> secretary said to me "BILL is suicidal. " I resented that remark as
>
> I'm just the opposite a "survivor".It is true I cursed the doctors
>
> as murderers while being strapped in bed and told to be quiet
>
> but is that sufficient reason to call a walk-out at about 11:00 am
>
> the next day during which I was left alone in the building for an
>
> interval of time? It should be remembered that I was under stress
>
> with the breakup of my marriage ,not being able to work
>
> and carring a humongous overdose of medicine leading to my
> =
>
> being labeled by the doctor as a schizophrenic paranoia. An orderly
>
> in passing by me in the hallway said "There goes Mr. mean guy !"
>
> These taunts have been etched in my mind forever. My room-mate
>
> who by the way was an Afro-American said to me " You know Bill if you
>
> holler too loud or too often the next place you go they will either
>
> ignore you or put a gag in your mouth" .
>
> I can't redo what's already been done but I can seek to improve
>
> the conditions which previously existed.The easy way to deal with
>
> problems which exists throughout the country in nursing homes and
>
> hospital is to pretend they don't exist.There has and will be times
>
> when the patient is brutalized or sedated heavily with sleeping pills
>
> to keep him/her quiet.The patient's civil rights have been abrogated a=
> nd
>
> he/she if beset by a chronic ailment which impair his ability to
>
> fight back ,the problem is exacerbated if no controls are implement-
> =
>
> ed quickly. Once the patient is intimated he/she becomes afraid of the=
>
>
> people he/she has held in trust and many revert to a very defensive
>
> position being overly distrustfull.The caregiver must at this time rea=
> ch
>
> the patient with a little warmth and kindness or suffer through a
>
> strained relationship.
> =
>
>
> To add a little fodder for the cannon,I jump back to an incident
>
> which came about while attending an elder care center back in the earl=
> y
>
> eighties.The group was sitting around having a snall snack - one woman=
>
>
> who was not the worst case there was sobbing uncontrolably and couldn'=
> t
> =
>
> simmer down.She had a rather frail build so in spite of having Alzheim=
> - =
>
>
> es Disease didn't appear to be a dangerous patient.She tried to impres=
> s
>
> upon the group the fact that she was beaten incessantly at a nursing
>
> home.I for one,do believe the incident to be true because of my own
>
> experience.
>
> You would as a tax paying citizen might think this sort of mat=
> ter
>
> is probably an isolated case which will be handled by the controls put=
>
>
> forth by the legislature.This topic of home health care figures to
>
> get worse - consider the following scenario.The hospitals today
>
> influenced by government spending on health care are becoming what I
>
> sarcastically call a McDONALD'S hamburger stand-you drive up to the
>
> window and order your appendectomy-the orderly services you,without yo=
> u
>
> leaving the car - you pay the bill and your done.Your free to wander
>
> into the night but where will you go if you are in need of prolonged
>
> health care if it isn't available ?
>
> It's the same old tack as put out by the nuclear-power people .
>
> They are constanly surveying the populous as to what each individual
>
> needs in the way of transportation to flee the area in case of a
>
> nuclear accident.If a melt down were to occur at the plant there
>
> would probably be an explosion which would wipe most of the populati=
> on
>
> surrounding the area and with the mushroom cloud extending to a fifty=
>
>
> mile radius along with radio-active particles which can have a half
>
> life of 900 years- you 'd better get far away for a lifetime.
>
>
> Subsequent to the writing of CH.II on pills ,I discovered a gener=
> ic
>
> substitute by luck for Sinemet a registered trademark of MERCK & CO.
>
> The day care which I visit serves their own pills to the patients an=
> d
>
> I noticed the pills were not oval but were round face.I inquired thro=
> -
>
> ough the nurse about the pill to be sure I was gettin the right medic=
> ine.
> =
>
> The c/l ratio was the same as the corresponding Sinemet 25/100
>
> version. At my most recent visit to the doctor I FOUND Atamet.I was
>
> given a prescription for the pills and am hopeful the pills will =
>
>
> remain as consistent as those taken at the nursing home. The pills =
>
> =
>
> are referred to as the generic ( 25/100 ).
>
> I came across a bulletin issued from one of the PD organiza=
> tion
> =
>
> in which a U OF KANAS study compared experimental data on
>
> the two pills ( Atamet & Sinemet ) and deemed them to be the same.
>
> =
>
> In writing this book, I've finally got the monkey off my back.
> =
>
> The episodes which I referred to are not fabricated or a distortion o=
> f
>
> the truth. We all have our own "crosses to bear " and this has been
>
> mine. There were many incidents both good and bad which were held bac=
> k =
>
> =
>
> but the message is clear - we as patients and caregivers need to alwa=
> ys
>
> be on our guard to challenge anything which resembles a disregard
> =
>
> or a violation of the rights of an individual to receive adequate =
>
> =
>
> medical care. Also, we as patients and caregivers- if we wish to live=
> a =
>
> =
>
> wholesome and fulfilling life must come to grips with the challenges
> =
>
> facing us as the inevitable journey of living plays out its course.
>
> Although many will have to bear a larger burden than others,life is
>
> meaningful when we can overcome setbacks and be stronger for having =
>
>
> endured them and face the future with optimism in spite of the =
>
>
> limitations imposed upon us because we are human. =
>
> =
>
> =
>
>
> --PART-BOUNDARY=.19511211505.ZM2550.ucs.indiana.edu--
>
> ------------------------------
>
> Date: Tue, 21 Nov 1995 12:46:47 -0800
> From: Rachel Balsam <[log in to unmask]>
> Subject: Re: protein
>
> On Tue, 21 Nov 1995, Joanne Sandstrom wrote:
>
> > I wish I could say that lowering protein intake (or at least changing when
> > protein is eaten) had had some effect on Don's condition. At least in his
> > case, however, it makes no difference.
>
> My father's neurologist also said that lowering protein intake makes no
> difference on my dad. The doctor said that some patient's drug
> absorption is not affected by protein intake.
>
> Rachel ([log in to unmask])
>
> ------------------------------
>
> Date: Tue, 21 Nov 1995 17:22:14 EST
> From: Peter Flintermann <[log in to unmask]>
> Subject: Re: What is end-stage PD?
>
> Helen--I suspect you're right that "end stage" PD as described in the charts
> doesn't happen to everyone--just like everything else about this crazy
> PD! Some folks are "taken off" by related things (e.g. aspiration
> pneumonia) which are brought on by the PD but only an indirect cause of
> death. Thus they tell us, "PD doesn't kill you!" :-)
> I wonder if the wandering was perhaps a bit of Alzheimer's which can in
> a percentage of cases overlap with PD after time. One man in our group
> was diag. first with AD, then with PD. His DR. was treating the AD and not
> recognizing that the PD was also increasing, so he was very
rigid--undermedicat
> ed. I feel there is a lot to be said for being realistic and open about
> what MAY lie down the road, but that shouldn't keep us from trying as hard
> as we can to keep going and keep up our spirits, PDs and CGs alike!
> Cheers--Camilla Flintermann(CG for Peter,76/6)
>
> ------------------------------
>
> Date: Tue, 21 Nov 1995 17:54:29 -0500
> From: [log in to unmask]
> Subject: AOL's CLINIC
>
> Robert Iocono and his Loma Linda team were to appear at 4:00PM est on AOL's
> "CLINIC" on November 21. I was trying to get there when I saw AOL's
> introduction. It stopped me cold, and I decided to write this instead. The
> introduction, which some of you may have seen, reads as follows:
>
> "Attorney General Janet Reno is the latest public figure to announce she has
> Parkinson's Disease. She, like Mohammed Ali and others, join the large number
> of those afflicted with the disease in this country. Yet, says neurosurgeon
> Robert Iocono, leader of Loma Linda Hospital's famed Movement Disorder Team,
> Parkinson's Disease is practically beaten as a disease. He points to
> Pallidotomy, the surgical technique he helped pioneer, and to radical drug
> therapies and strict diet as weapons available to Parkie patients."
>
> I don't know whether the inaccuracies in this paragraph are the
> responsibilities of AOL, of Dr. Iocono, or others on the Loma Linda team.
> However, with "friends" like these, we have no need of enemies. There is no
> surer way to turn off future funding for research on cures for Parkinson's
> Disease, than to have a famed neurosurgeon in the field quoted as saying that
> it is already practically beaten as a disease.
>
> If Dr. Iocono is not responsible for this quotation, I wish that those on
> this list who are close to him would ask him to disavow it publically. If he
> really is responsible for the comment, I just don't know what to say.
>
> While I'm on the subject, the article on Janet Reno in the November 27th
> issue of TIME which arrived here today also confused the issue by the remark:
> "..(Janet Reno) stressed that the condition is being controlled by medication
> - and underscored the point by extending a rock-steady hand." As all of you
> know, control of the tremor does not mean that the condition (PD progression)
> is controlled. It surely wouldn't hurt for those of you who can, to write
> TIME and comment on the fact that their report is misleading. I certainly
> will.
>
> Jerry Gleason ([log in to unmask])
>
> ------------------------------
>
> Date: Tue, 21 Nov 1995 14:34:12 PST
> From: Gary Zimmerman <[log in to unmask]>
> Subject: Happy Thanksgiving to all
>
> ,+*^^*+___+++_
> ,*^^^^ )
> _+* ^**+_
> +^ _ _++*+_+++_, )
> _+^^*+_ ( ,+*^ ^ \+_ )
> { ) ( ,( ,_+--+--, ^) ^\
> { (@) } f ,( ,+-^ __*_*_ ^^\_ ^\ )
> {:;-/ (_+*-+^^^^^+*+*<_ _++_)_ ) ) /
> ( / ( ( ,___ ^*+_+* ) < < \
> U _/ ) *--< ) ^\-----++__) ) ) )
> ( ) _(^)^^)) ) )\^^^^^))^*+/ / /
> ( / (_))_^)) ) ) ))^^^^^))^^^)__/ +^^
> ( ,/ (^))^)) ) ) ))^^^^^^^))^^) _)
> *+__+* (_))^) ) ) ))^^^^^^))^^^^^)____*^
> \ \_)^)_)) ))^^^^^^^^^^))^^^^)
> (_ ^\__^^^^^^^^^^^^))^^^^^^^)
> ^\___ ^\__^^^^^^))^^^^^^^^)\\
> ^^^^^\uuu/^^\uuu/^^^^\^\^\^\^\^\^\^\
> ___) >____) >___ ^\_\_\_\_\_\_\)
> ^^^//\\_^^//\\_^ ^(\_\_\_\)
> ^^^ ^^ ^^^ ^^
>
> ------------------------------
>
> Date: Tue, 21 Nov 1995 15:15:02 -0700
> From: "Ronald F. Vetter" <[log in to unmask]>
> Subject: comments and a question
>
> The indications of work status seem to have gotten more to respond who are
> working. I am not working for pay - since 1988 - except for some part time
> in 1989. 59/11/ret/no I do numerous volunteer activities. Stress
> levels vary greatly depending upon which family member(s) I am dealing
> with, where, and what the circustances are. Using tools including
> computers can become stressful when learning something new, when
> malfunctions occur, etc. Attempting to influence the nations leaders can
> be stressful.
>
> another subject: my metabolism seems to have become l-dopa dependent in the
> "mode" that my food intake which generally follows pill ingestion by about
> 30 minutes initiates fuel-burning as digestion actually absorption into the
> bloodstream initiates. I seem to perspire for10 to 30 minutes as a result
> of each eal-snack whch I ingest to transport the l-dopa into the
> bloodstream. This seems more pronounced during the past year or two -- my
> 10th and 11th years of taking c-dopa/l-dopa.
>
> My question is whether others have noticed this?
>
> I find that adding and shedding clothing layers appropriately requires
> frequent cognitive attention to how my temperature seems to be.
>
> Ron,59,dz PD 11 <[log in to unmask]> Ronald Vetter
> http://www1.ridgecrest.ca.us/~rfvetter/
>
> ------------------------------
>
> Date: Tue, 21 Nov 1995 18:21:06 -0500
> From: Joanna Porvin <[log in to unmask]>
> Subject: Re: AOL's CLINIC
>
> Thanks for posting this, Jerry. Zoinks! I definitely want to "go"
> tomorrow and see what it is like. Should be very interesting -- and
> perhaps very alarming. I would encourage other folks to attend if possible.
>
> Joanna
> [log in to unmask]
> [log in to unmask]
>
> On Tue, 21 Nov 1995 [log in to unmask] wrote:
>
> > Robert Iocono and his Loma Linda team were to appear at 4:00PM est on AOL's
> > "CLINIC" on November 21. I was trying to get there when I saw AOL's
> > introduction. It stopped me cold, and I decided to write this instead. The
> > introduction, which some of you may have seen, reads as follows:
> >
> > "Attorney General Janet Reno is the latest public figure to announce she has
> > Parkinson's Disease. She, like Mohammed Ali and others, join the large
number
> > of those afflicted with the disease in this country. Yet, says neurosurgeon
> > Robert Iocono, leader of Loma Linda Hospital's famed Movement Disorder Team,
> > Parkinson's Disease is practically beaten as a disease. He points to
> > Pallidotomy, the surgical technique he helped pioneer, and to radical drug
> > therapies and strict diet as weapons available to Parkie patients."
> >
> > I don't know whether the inaccuracies in this paragraph are the
> > responsibilities of AOL, of Dr. Iocono, or others on the Loma Linda team.
> > However, with "friends" like these, we have no need of enemies. There is no
> > surer way to turn off future funding for research on cures for Parkinson's
> > Disease, than to have a famed neurosurgeon in the field quoted as saying
that
> > it is already practically beaten as a disease.
> >
> > If Dr. Iocono is not responsible for this quotation, I wish that those on
> > this list who are close to him would ask him to disavow it publically. If he
> > really is responsible for the comment, I just don't know what to say.
> >
> > While I'm on the subject, the article on Janet Reno in the November 27th
> > issue of TIME which arrived here today also confused the issue by the
remark:
> > "..(Janet Reno) stressed that the condition is being controlled by
medication
> > - and underscored the point by extending a rock-steady hand." As all of you
> > know, control of the tremor does not mean that the condition (PD
progression)
> > is controlled. It surely wouldn't hurt for those of you who can, to write
> > TIME and comment on the fact that their report is misleading. I certainly
> > will.
> >
> > Jerry Gleason ([log in to unmask])
> >
>
> ------------------------------
>
> Date: Tue, 21 Nov 1995 18:27:43 -0500
> From: Lisa Sommer <[log in to unmask]>
> Subject: Sixty Minutes 11-19-95
>
> Hello, everyone. I just subscribed to this list. My father has
> Parkinson's.
>
> Apologies if this has already been discussed here, but did anyone see 60
> Minutes this past Sunday? They had some dramatic video of a pallidotomy. We
> happened to turn on the television toward the end of the story and didn't
> catch the name of the hospital and surgeon(s). If anyone could send me this
> info., I'd be grateful.
>
> Thanks,
>
> Lisa Sommer ([log in to unmask])
>
> ------------------------------
>
> Date: Tue, 21 Nov 1995 19:37:26 -0500
> From: [log in to unmask]
> Subject: Budget Update
>
> Senator J. James Exon, Democrat, Nebraska
>
> is ranking minority member of the budget committee and will head the
> Democrats group in drafting a workable budget for presentation under the new
> approach announced yesterday....
>
> Senator Exon has been approached repeatedly by the NE PD groups and he has
> never responded with more than a perfunctory form letter to our requests.
> His office staff however is quite friendly and supportive. Maybe the time
> has come for any and all of you active in the Udall Bill movement to copy Sen
> Exon on some of your mail to the senate.........
>
> He is not going for re election......he supports medical research in general.
> Has grave concerns over budget deficit.
>
> Let's keep him aware of the PD community.
>
> Rita Weeks
>
> ------------------------------
>
> Date: Tue, 21 Nov 1995 16:38:54 -0800
> From: Joanne Sandstrom <[log in to unmask]>
> Subject: Re: AOL's CLINIC
>
> AOL's clinic, Time's article, 60 Minutes' report--all should get protest
> letters from all of us. Does anyone know e-mail addresses for any or alll
> of these?
>
> Joanne Sandstrom
> [log in to unmask]
>
> ------------------------------
>
> Date: Tue, 21 Nov 1995 20:19:02 -0500
> From: Barbara Patterson <[log in to unmask]>
> Subject: Address for the list and the listserver
>
> The .BITNET address for the parkinsn list and listserver are no longer
> valid. All messages posted to the list must be addressed to:
>
> [log in to unmask]
>
> All messages directed to the listserver must be addressed to:
>
> [log in to unmask]
>
> I hope this does not cause a great inconvenience but the powers-that-be
> have spoken. I realize that most of our members could not use the
> .BITNET address before so there is no change.
>
> Also, if you are going away on vacation for a week or so, please send a
> message to the listserver saying:
>
> set parkinsn nomail
>
> When you return, send a message to the listserver saying:
>
> set parkinsn mail
> or
> set parkinsn digest
>
> Barb
>
> ============================================================================
> Barbara Patterson [log in to unmask]
> HSC 2J22 905-525-9140, ext. 22403
> School of Nursing
> ============================================================================
>
> ------------------------------
>
> Date: Tue, 21 Nov 1995 21:21:53 -0500
> From: "Brenner J. Klenzman" <[log in to unmask]>
> Subject: .
>
> Hello all:
>
> I feel I should thank you for letting me be a part of this group--I have not
> (yet?) been personally affected by PD. My interest is twofold: first,
> compassion compels me to be concerned about the devestating effects this
> disease has on people, and professionally, as a representative for DuPont
> Pharma.
>
> What I can and cannot say in this type of forum is dictated by legal
> constraints. What I have discovered is that there are many areas in which I
> can do a better job educating physicians--such as stress the effects of
> protien and absorption of Sinemet. I will pass on such observations to the
> DuPont electronic community (our home computer). I hope, in the long run,
> our efforts to educate physicians can lead to better care.
>
> Sincerely, Brenner J. Klenzman ([log in to unmask])
>
> ------------------------------
>
> Date: Tue, 21 Nov 1995 20:24:59 -0600
> From: "P. Schark" <[log in to unmask]>
> Subject: Re: Medication Breakdown
>
> Thanks to all who replied and shared your experiences with CR. I checked
> my bottle, and it does say 25/100 CR. It is half of that I was taking.
> My neurologist thinks that wasn't enough, and suggests I need 3/4 or
> alternating 1 and 1/2. He thinks the day and a half trial wasn't
> sufficient for me to know anything, especially since I was experimenting
> with the dosage during that time. Unfortunately, when I called his
> answering service Sunday morning, the neurologist on call was not a
> Parkinson's doctor and advised me to stop taking the CR. I'd like to
> find a convenient time to withdraw from the world to try this again, but
> can't imagine when that will be.
>
> My neurologist had his students research melatonin, since I was
> interested in trying it for my insomnia, and he claims it's
> contra-indicated for PD because it makes the symptoms worse. No one
> seems to have experienced that problem, however, and I'd sure like to try
> something. He's also one of the researchers on the DATATOP study and
> isn't at all convinced eldepryl slows the diseas's progression for those
> taking sinemet. This contradicts most of what I read about it, though.
> He had me stop taking it last year because it gave me insomnia and he
> doesn't want me to take sleep medication. I agree with his philosophy of
> keeping meds to a minimum, but some of this is necessary and I find
> myself wishing he weren't quite so conservative.
>
>
> Since your response was so helpful, I'd like to bring up another
> problem. I'm a high school teacher and have been working for ten years
> after diagnosis. As you probably know, teaching is no picnic these days
> for healthy people, and I'm experiencing enough problems that tell me
> it's time to retire. My doctor disagrees, however, and feels I can work
> much longer. Therefore, he won't help me apply for a disability
> retirement and I'm not eligible for regular retirement for five more
> years. Like all of us, I'm concerned about the future, economically as
> well as medically, and feel I can't afford to sacrifice my retirement
> benefits by pulling out early. What to do???
>
> Pat Schark ([log in to unmask])
>
> ------------------------------
>
> Date: Tue, 21 Nov 1995 21:27:02 -0500
> From: Cathy Smith <[log in to unmask]>
> Subject: PD symptoms
>
> Would like some information on the experience of others with several PD
> symptoms. My mother, 82 years old, PD - 5 yrs., experiences a great deal of
> saliva accumulation - especially at night. Although she does not drool, she
> is very upset with it and naturally complains of having a very dry throat.
> She tries to keep a lozenge or candy in her mouth during the day - but gets
> tired of the same tastes and sugar content. I should
> mention she has a full set of dentures which don't fit well because of bone
> loss and frequently develops sores in her mouth. Are the sores PD-related?
> I'd appreciate any suggestions on how to deal with this problem. Thanks
> much! Cathy
>
> ------------------------------
>
> Date: Tue, 21 Nov 1995 19:20:43 -0800
> From: "J.R. Bruman" <[log in to unmask]>
> Subject: Re: Medication Breakdown
>
> Regarding your need for disability retirement, sounds to me like you
> need another neurologist.
> Cheers, Joe
>
>
> J. R. Bruman (818) 789-3694
> 3527 Cody Road
> Sherman Oaks CA 91403
>
> ------------------------------
>
> Date: Tue, 21 Nov 1995 23:28:57 -0500
> From: David Rohrbaugh <[log in to unmask]>
> Subject: Re: Sleep problems in PD
>
> I take Eldepryl and took melatoninbut it didn't work to help me sleep. I
> took 2 pills at bedtime. I gave up. Just lay awake from 2am on.
>
> ------------------------------
>
> End of PARKINSN Digest - 20 Nov 1995 to 21 Nov 1995
> ***************************************************
>
Arlene S. Allen
Homeless-Missing Persons Project
http://www.inca.net/hmpp
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May 2002, Week 3
May 2002, Week 2
May 2002, Week 1
April 2002, Week 5
April 2002, Week 4
April 2002, Week 3
April 2002, Week 2
April 2002, Week 1
March 2002, Week 5
March 2002, Week 4
March 2002, Week 3
March 2002, Week 2
March 2002, Week 1
February 2002, Week 4
February 2002, Week 3
February 2002, Week 2
February 2002, Week 1
January 2002, Week 5
January 2002, Week 4
January 2002, Week 3
January 2002, Week 2
January 2002, Week 1
December 2001, Week 5
December 2001, Week 4
December 2001, Week 3
December 2001, Week 2
December 2001, Week 1
November 2001, Week 5
November 2001, Week 4
November 2001, Week 3
November 2001, Week 2
November 2001, Week 1
October 2001, Week 5
October 2001, Week 4
October 2001, Week 3
October 2001, Week 2
October 2001, Week 1
September 2001, Week 5
September 2001, Week 4
September 2001, Week 3
September 2001, Week 2
September 2001, Week 1
August 2001, Week 5
August 2001, Week 4
August 2001, Week 3
August 2001, Week 2
August 2001, Week 1
July 2001, Week 5
July 2001, Week 4
July 2001, Week 3
July 2001, Week 2
July 2001, Week 1
June 2001, Week 5
June 2001, Week 4
June 2001, Week 3
June 2001, Week 2
June 2001, Week 1
May 2001, Week 5
May 2001, Week 4
May 2001, Week 3
May 2001, Week 2
May 2001, Week 1
April 2001, Week 5
April 2001, Week 4
April 2001, Week 3
April 2001, Week 2
April 2001, Week 1
March 2001, Week 5
March 2001, Week 4
March 2001, Week 3
March 2001, Week 2
March 2001, Week 1
February 2001, Week 4
February 2001, Week 3
February 2001, Week 2
February 2001, Week 1
January 2001, Week 5
January 2001, Week 4
January 2001, Week 3
January 2001, Week 2
January 2001, Week 1
December 2000, Week 5
December 2000, Week 4
December 2000, Week 3
December 2000, Week 2
December 2000, Week 1
November 2000, Week 5
November 2000, Week 4
November 2000, Week 3
November 2000, Week 2
November 2000, Week 1
October 2000, Week 5
October 2000, Week 4
October 2000, Week 3
October 2000, Week 2
October 2000, Week 1
September 2000, Week 5
September 2000, Week 4
September 2000, Week 3
September 2000, Week 2
September 2000, Week 1
August 2000, Week 5
August 2000, Week 4
August 2000, Week 3
August 2000, Week 2
August 2000, Week 1
July 2000, Week 5
July 2000, Week 4
July 2000, Week 3
July 2000, Week 2
July 2000, Week 1
June 2000, Week 5
June 2000, Week 4
June 2000, Week 3
June 2000, Week 2
June 2000, Week 1
May 2000, Week 5
May 2000, Week 4
May 2000, Week 3
May 2000, Week 2
May 2000, Week 1
April 2000, Week 5
April 2000, Week 4
April 2000, Week 3
April 2000, Week 2
April 2000, Week 1
March 2000, Week 5
March 2000, Week 4
March 2000, Week 3
March 2000, Week 2
March 2000, Week 1
February 2000, Week 5
February 2000, Week 4
February 2000, Week 3
February 2000, Week 2
February 2000, Week 1
January 2000, Week 5
January 2000, Week 4
January 2000, Week 3
January 2000, Week 2
January 2000, Week 1
December 1999, Week 5
December 1999, Week 4
December 1999, Week 3
December 1999, Week 2
December 1999, Week 1
November 1999, Week 5
November 1999, Week 4
November 1999, Week 3
November 1999, Week 2
November 1999, Week 1
October 1999, Week 5
October 1999, Week 4
October 1999, Week 3
October 1999, Week 2
October 1999, Week 1
September 1999, Week 5
September 1999, Week 4
September 1999, Week 3
September 1999, Week 2
September 1999, Week 1
August 1999, Week 5
August 1999, Week 4
August 1999, Week 3
August 1999, Week 2
August 1999, Week 1
July 1999, Week 5
July 1999, Week 4
July 1999, Week 3
July 1999, Week 2
July 1999, Week 1
June 1999, Week 5
June 1999, Week 4
June 1999, Week 3
June 1999, Week 2
June 1999, Week 1
May 1999, Week 5
May 1999, Week 4
May 1999, Week 3
May 1999, Week 2
May 1999, Week 1
April 1999, Week 5
April 1999, Week 4
April 1999, Week 3
April 1999, Week 2
April 1999, Week 1
March 1999, Week 5
March 1999, Week 4
March 1999, Week 3
March 1999, Week 2
March 1999, Week 1
February 1999, Week 4
February 1999, Week 3
February 1999, Week 2
February 1999, Week 1
January 1999, Week 5
January 1999, Week 4
January 1999, Week 3
January 1999, Week 2
January 1999, Week 1
December 1998, Week 5
December 1998, Week 4
December 1998, Week 3
December 1998, Week 2
December 1998, Week 1
November 1998, Week 5
November 1998, Week 4
November 1998, Week 3
November 1998, Week 2
November 1998, Week 1
October 1998, Week 5
October 1998, Week 4
October 1998, Week 3
October 1998, Week 2
October 1998, Week 1
September 1998, Week 5
September 1998, Week 4
September 1998, Week 3
September 1998, Week 2
September 1998, Week 1
August 1998, Week 5
August 1998, Week 4
August 1998, Week 3
August 1998, Week 2
August 1998, Week 1
July 1998, Week 5
July 1998, Week 4
July 1998, Week 3
July 1998, Week 2
July 1998, Week 1
June 1998, Week 5
June 1998, Week 4
June 1998, Week 3
June 1998, Week 2
June 1998, Week 1
May 1998, Week 5
May 1998, Week 4
May 1998, Week 3
May 1998, Week 2
May 1998, Week 1
April 1998, Week 5
April 1998, Week 4
April 1998, Week 3
April 1998, Week 2
April 1998, Week 1
March 1998, Week 5
March 1998, Week 4
March 1998, Week 3
March 1998, Week 2
March 1998, Week 1
February 1998, Week 5
February 1998, Week 4
February 1998, Week 3
February 1998, Week 2
February 1998, Week 1
January 1998, Week 5
January 1998, Week 4
January 1998, Week 3
January 1998, Week 2
January 1998, Week 1
December 1997, Week 5
December 1997, Week 4
December 1997, Week 3
December 1997, Week 2
December 1997, Week 1
November 1997, Week 5
November 1997, Week 4
November 1997, Week 3
November 1997, Week 2
November 1997, Week 1
October 1997, Week 5
October 1997, Week 4
October 1997, Week 3
October 1997, Week 2
October 1997, Week 1
September 1997, Week 5
September 1997, Week 4
September 1997, Week 3
September 1997, Week 2
September 1997, Week 1
August 1997, Week 5
August 1997, Week 4
August 1997, Week 3
August 1997, Week 2
August 1997, Week 1
July 1997, Week 5
July 1997, Week 4
July 1997, Week 3
July 1997, Week 2
July 1997, Week 1
June 1997, Week 5
June 1997, Week 4
June 1997, Week 3
June 1997, Week 2
June 1997, Week 1
May 1997, Week 5
May 1997, Week 4
May 1997, Week 3
May 1997, Week 2
May 1997, Week 1
April 1997, Week 5
April 1997, Week 4
April 1997, Week 3
April 1997, Week 2
April 1997, Week 1
March 1997, Week 5
March 1997, Week 4
March 1997, Week 3
March 1997, Week 2
March 1997, Week 1
February 1997, Week 5
February 1997, Week 4
February 1997, Week 3
February 1997, Week 2
February 1997, Week 1
January 1997, Week 5
January 1997, Week 4
January 1997, Week 3
January 1997, Week 2
January 1997, Week 1
December 1996, Week 5
December 1996, Week 4
December 1996, Week 3
December 1996, Week 2
December 1996, Week 1
November 1996, Week 5
November 1996, Week 4
November 1996, Week 3
November 1996, Week 2
November 1996, Week 1
October 1996, Week 5
October 1996, Week 4
October 1996, Week 3
October 1996, Week 2
October 1996, Week 1
September 1996, Week 5
September 1996, Week 4
September 1996, Week 3
September 1996, Week 2
September 1996, Week 1
August 1996, Week 5
August 1996, Week 4
August 1996, Week 3
August 1996, Week 2
August 1996, Week 1
July 1996, Week 5
July 1996, Week 4
July 1996, Week 3
July 1996, Week 2
July 1996, Week 1
June 1996, Week 5
June 1996, Week 4
June 1996, Week 3
June 1996, Week 2
June 1996, Week 1
May 1996, Week 5
May 1996, Week 4
May 1996, Week 3
May 1996, Week 2
May 1996, Week 1
April 1996, Week 5
April 1996, Week 4
April 1996, Week 3
April 1996, Week 2
April 1996, Week 1
March 1996, Week 5
March 1996, Week 4
March 1996, Week 3
March 1996, Week 2
March 1996, Week 1
February 1996, Week 5
February 1996, Week 4
February 1996, Week 3
February 1996, Week 2
February 1996, Week 1
January 1996, Week 5
January 1996, Week 4
January 1996, Week 3
January 1996, Week 2
January 1996, Week 1
December 1995, Week 5
December 1995, Week 4
December 1995, Week 3
December 1995, Week 2
December 1995, Week 1
November 1995, Week 5
November 1995, Week 4
November 1995, Week 3
November 1995, Week 2
November 1995, Week 1
October 1995, Week 5
October 1995, Week 4
October 1995, Week 3
October 1995, Week 2
October 1995, Week 1
September 1995, Week 5
September 1995, Week 4
September 1995, Week 3
September 1995, Week 2
September 1995, Week 1
August 1995, Week 5
August 1995, Week 4
August 1995, Week 3
August 1995, Week 2
August 1995, Week 1
July 1995, Week 5
July 1995, Week 4
July 1995, Week 3
July 1995, Week 2
July 1995, Week 1
June 1995, Week 5
June 1995, Week 4
June 1995, Week 3
June 1995, Week 2
June 1995, Week 1
May 1995, Week 5
May 1995, Week 4
May 1995, Week 3
May 1995, Week 2
May 1995, Week 1
April 1995, Week 5
April 1995, Week 4
April 1995, Week 3
April 1995, Week 2
April 1995, Week 1
March 1995, Week 5
March 1995, Week 4
March 1995, Week 3
March 1995, Week 2
March 1995, Week 1
February 1995, Week 4
February 1995, Week 3
February 1995, Week 2
February 1995, Week 1
January 1995, Week 5
January 1995, Week 4
January 1995, Week 3
January 1995, Week 2
January 1995, Week 1
December 1994, Week 5
December 1994, Week 4
December 1994, Week 3
December 1994, Week 2
December 1994, Week 1
November 1994, Week 5
November 1994, Week 4
November 1994, Week 3
November 1994, Week 2
November 1994, Week 1
October 1994, Week 5
October 1994, Week 4
October 1994, Week 3
October 1994, Week 2
October 1994, Week 1
September 1994, Week 5
September 1994, Week 4
September 1994, Week 3
September 1994, Week 2
September 1994, Week 1
August 1994, Week 5
August 1994, Week 4
August 1994, Week 3
August 1994, Week 2
August 1994, Week 1
July 1994, Week 5
July 1994, Week 4
July 1994, Week 3
July 1994, Week 2
July 1994, Week 1
June 1994, Week 5
June 1994, Week 4
June 1994, Week 3
June 1994, Week 2
June 1994, Week 1
May 1994, Week 5
May 1994, Week 4
May 1994, Week 3
May 1994, Week 2
May 1994, Week 1
April 1994, Week 5
April 1994, Week 4
April 1994, Week 3
April 1994, Week 2
April 1994, Week 1
March 1994, Week 5
March 1994, Week 4
March 1994, Week 3
March 1994, Week 2
March 1994, Week 1
February 1994, Week 4
February 1994, Week 3
February 1994, Week 2
February 1994, Week 1
February 1994
January 1994
December 1993
November 1993
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