I'm just a lurker on this list cuz my friend has PD.  You are amazing
folks.  Nice list.

Ringing ears is referred to as tinnitus.  It is has several causes, but
the bottom line is that something has/is irritated the inner ear.  Many
drugs are ototoxic (e.g., asprin in sufficient quantity or over long
periods) which means they can damage the hearing mechanism.
Tinnitus can be a symptom and it may persist after the irritant is
withdrawn.

Given the quantity and combinations of drugs PD folks have to take, it's
reasonable to bring this symptom to the attention of your neurologist.
He/she may refer you to an ear specialist (otologist).

Hope this helps.

.... Bob Carpenter
Seattle, WA

On Sat, 6 Apr 1996, Automatic digest processor wrote:

> There are 24 messages totalling 728 lines in this issue.
>
> Topics of the day:
>
>   1. OPCA (2)
>   2. NPF doctor dissappears
>   3. Udall Supporter (??)
>   4. Pallidotomy info
>   5. new member
>   6. Prozac and Parkinsons
>   7. Embryonic tissue grafts
>   8. Down but not out - Looking for advice
>   9. re Diphasic Dyskinesias
>  10. Correction re Diphasic Dyskinesias
>  11. Ringing ears (4)
>  12. YOPD in Upstate New York
>  13. Delaying taking Sinemet
>  14. Sinemet & Prednisone
>  15. Prednisone and Sinemet
>  16. brushing your teeth
>  17. <No subject given>
>  18. New to the list (fwd) (2)
>  19. How I reduced Dyskensias.
>
> ----------------------------------------------------------------------
>
> Date:    Thu, 4 Apr 1996 11:58:34 -0500
> From:    Don Ball <[log in to unmask]>
> Subject: Re: OPCA
>
> At 08:16 AM 4/4/96 -0500, you wrote:
> >I am new here and am looking for anyone with knowledge of
> >Olivopontocerabellar Atrophy.  My brother was diagnosed about ten years ago.
> >Other sources suggested this forum for information and support.  If I am in
> >the wrong place, please let me know.
>
>
> You might also try the two sources below:
>
>         [log in to unmask]
>
> or
>
>         [log in to unmask]
>
> The second is a listserv devoted to the multiple system atrophy syndromes.
>
> Don Ball
> [log in to unmask]
>
> ------------------------------
>
> Date:    Thu, 4 Apr 1996 20:40:12 -0500
> From:    [log in to unmask]
> Subject: NPF doctor dissappears
>
> I had a terrible experience because an appointment set up for me,although
> confirmed, never happened, at the National Parkinson Foundation (NPF) clinic
> in Miami.
>
> I travelled there from Maine with a Certified Nurse's Aide acompanying me.
>  When Dr. Juan Sanchez-Ramos was not there, mysteriously, the $3,100  I spent
> was lost.  The CNA and I had to fly home.
>
> I live on Social Security and cannot afford to lose $3100.
> All attempts for two years (the appointment was 5/17/94)
> to get $3,100 compensation have failed.
>
> Can anyone suggest  a way to get my money back for the abandoned appointment
> from either the doctor or the NPF?
>
>
> Ivan Suzman ([log in to unmask])  tel: 207-797-8488
> Please  call if you have a suggestion--or  e-mail.  Thank you.
>
> ------------------------------
>
> Date:    Fri, 5 Apr 1996 00:14:03 -0500
> From:    "Stephen B. Duff" <[log in to unmask]>
> Subject: Re: Udall Supporter (??)
>
> At 06:04 PM 4/4/96 -0500, Sherri Cave wrote:
> >                                 RTK.NET Mail 138348   Apr  4 18:04:33 1996
> >
> >
> >Greetings!  I was going to wait to respond to your message until I received
> >a written set of follow-up tips from PAN, but my mail service has occasionally
> >
> If PAN has a written plan or tips to gain support for the Udall Bill, I
> would be very interested in receiving a copy.  If it is already published
> int eh list archives, please point me in the right direction.  I have not
> been a list member for very long and have not had a chance to look at all of
> the past postings.  If this has already been suggested, please disregard.
> Otherwise, read on ...
>
> I'd like to suggest another possible strategy to help focus attention on the
> Udall Bill.  We might be able to communicate to corporations and ask them to
> have their lobbyists push for co-sponsors of the legislation.  After all,
> corporations have something at stake in this as well.  There are many people
> with valuable knowledge that must shorten their careers due to PD and the
> stress that goes along with caring for family members with PD also affects
> the productivity of millions more.  Why not give this a try.  I'd like to
> hear any comments about this approach e.g. has anyone tried it ???
>
> Regards,
> Stephen Duff    [log in to unmask]
>
> ------------------------------
>
> Date:    Thu, 4 Apr 1996 23:30:58 -0500
> From:    DEBORAH BELLMAN <[log in to unmask]>
> Subject: Pallidotomy info
>
> Can anyone tell me if there is a way i can get a list of comments, info on
> the pallidotomy operation, perhaps in the last year or so?...i want to
> learn all i can for my mother is a possible candidate.
> I did send a message re. this earlier this week and wonder if it did not
> get through.. thank
> [log in to unmask]
>
> ------------------------------
>
> Date:    Fri, 5 Apr 1996 01:15:16 -0500
> From:    Kathie Tollifson <[log in to unmask]>
> Subject: Re: new member
>
> Rosemary wrote:
>
>   My worst symptom (according to my neurologist) is tremor of
> >the right arm.  To me, my most disabling feature is fatigue/weakness.
>
> >
> >         What do others my age (& single) do about their future?  I feel like
> >I have no real future because everything has changed.  I have wonderful
> >family & friends, but they don't really understand what it is like--and I
> >don't expect them to.
>
> Hi Rosemary,
>
> Your letter echoed my sentiments of late, diagnosed 2+ yrs ago at age 43,
> now 8 years into PD, also taking low dose sinemet, parlodel, eldypryl, plus
> NADH, and totally exhausted. I have had a very successful career for 17
> years, raising 2 kids as a single mom. I have been able to juggle 2
> businesses, social life, church, having real zest for life. Even my first
> years with PD didn't seem to affect my stamina so dramatically, although I
> started coming home for a lunchtime nap 5 or so years ago.
>
> I have been systematically cutting back my work load for a year or so, my
> husband has closed down his business and taken over much of mine, and not a
> moment too soon! After all these years of fighting to keep things "together"
> I marvel at how little I care about stuff in the face of this monumental
> fatigue. I go from day to day in the eternal hope that the next catnap will
> restore me to some semblance of my old self.
>
> I have a feeling that there is no solution for this problem, all my young
> onset freinds claim to feel better, and they sure look better after they
> finally clean out their desks and downshift into early retirement, which to
> us parkys usually means finally doing the 10 million things that work
> interfered with! So, for myself I believe it is time to start to lay the
> groundwork for that event (retirement). I am finding that I actually look
> forward to the time, when for years I have feared it.
>
> I guess the one alternative that occurs to me is to go the fetal transplant
> route, which we don't seem to have much testimony about on this list. Maybe
> our other new member  Patrik will have some input on this option. I would
> really be interested in hearing from any list folks who have been down this
> road, there seems to be a great deal of conflict between the claims made for
> this method.
>
> Kathie Tollifson
> [log in to unmask]
>
> ------------------------------
>
> Date:    Thu, 4 Apr 1996 21:07:21 -0500
> From:    [log in to unmask]
> Subject: Re: Prozac and Parkinsons
>
> Let's be clear on Depression as a clear side effect verses being depressed at
> having Parkinsons.  The later probably ought not to be treated with drugs,
> unless serious.  However, if your Mother suffers depression as a side effect,
> an anti depressant is certainly not extreme therapyl
>
> When I'm off my anti-depressant, I'm feel that life is not worth living, and
> those around me feel the same also.  My depression is so bad, I actually feel
> painfully naseous.  Over the years, I've taken Prozac, Paxcil, and now
> Serzone.  Wouldn't do without one of them.  I'm favoring Serzone because for
> me, the side effects of the first two (Insomnia & Very Low Libido) interfered
> with the "Normalcy" of my life.
>
> ------------------------------
>
> Date:    Fri, 5 Apr 1996 06:30:15 -0500
> From:    Nancy Walker <[log in to unmask]>
> Subject: Re: OPCA
>
> At 08:16 AM 4/4/96 -0500, you wrote:
> >I am new here and am looking for anyone with knowledge of
> >Olivopontocerabellar Atrophy.  My brother was diagnosed about ten years ago.
> >Other sources suggested this forum for information and support.  If I am in
> >the wrong place, please let me know.
> >Jim
> >
>
>
> Jim,
>
> Please explain what this is.  Also, if you have access to the WWW use one of
> the search engines.  That's how I found this list.
>
> Nancy Walker
> [log in to unmask]
>
> ------------------------------
>
> Date:    Fri, 5 Apr 1996 08:12:27 -0500
> From:    Patrik Brundin <[log in to unmask]>
> Subject: Embryonic tissue grafts
>
> Response to Kathie Tollifson from Patrik Brundin
>
> >I guess the one alternative that occurs to me is to go the fetal transplant
> >route, which we don't seem to have much testimony about on this list. Maybe
> >our other new member  Patrik will have some input on this option.
>
> The expereince in many centers is very positive indeed. It is very much a
> question of what tissue preparation and surgical techniques are being used.
>
>
> If you are interested in this field you can check out a Network of European
> CNS Transplantation And Restoration (NECTAR)which is aimed at a concerted
> European effort to develop efficient, reliable, safe and ethically
> acceptable transplantation therapies for neurodegenerative diseases, in
> particular Parkinson's and Huntington's diseases. NECTAR is sponsored by
> the European Union BIOMED program and promotes an open exchange of ideas
> and data on clinical trials and basic experiments aimed at developing
> reconstructive therapies, eg brain tissue transplantation, in neurological
> disorders.
> You'll find more information about NECTAR at the following WWW-site:
>
> http://www.wblab.lu.se/extern/nectar/NECTARINDEX.html
>
>
> Kathie Tollifson also wrote:
>
> >I would
> >really be interested in hearing from any list folks who have been down this
> >road, there seems to be a great deal of conflict between the claims made for
> >this method.
>
> I would in fact also be interested in hearing from personal experiences of
> patients grafted and who are subscribers of this bulletin board.
>
> Sincerely yours,
>
> Patrik
>
>
> ---------------------------------------
> Patrik Brundin MD PhD
> Assistant professor of Neurobiology
> Section for Neuronal Survival
> Department of Physiology and Neuroscience
> University of Lund
> Biskopsg. 5
> S-223 62 Lund, SWEDEN
> Work phone +46-46-2227929; fax  +46-46-2223065
>
> Home phone and fax +46-46-2119025
> Minicall: 0740-225057
> Email: [log in to unmask]
> ----------------------------------------
>
> ------------------------------
>
> Date:    Fri, 5 Apr 1996 10:01:04 -0500
> From:    gordon seese <[log in to unmask]>
> Subject: Re: Down but not out - Looking for advice
>
>           Gordon and I wondered why you are taking Sinemet CR and another
> Sinemet prescription at once. Also, could you change back to the medication
> you took before and drop the new one?  Do one at a time, of course. At 11:57
> AM 4/4/96 -0500, you wrote:
> > We are at a low point now and have been there for about 6 weeks. Nancy
> >had
> > been progressing beatifully since her unilateral pallidotomies last
> >May
> > and July. We have been adjusting and changing meds in an attempt to
> >get as
> > much benefit out of the surgery as possible, but we have managed to
> >get
> > into trouble. After successfully using Prozac to contol depression for
> > nearly 7 years, we decided to try Serzone. As has been reported here
> >it is
> > supposed to have fewer side effects than Prozac including less impact
> >on
> > sleep disorders and sexual function.
> >
> > At this crossroad depression is contolling our lives. Neither of us
> >are
> > getting much sleep. Nancy is hyperactive, compulsive and crys easily
> >but
> > only briefly (1 or 2 minutes per episode). PD off periods are awful.
> > Freezing and akinesia are potent and long lasting (one to two hours at
> >a
> > time). PD meds seem to be working but the results aren't normal. For
> > example the standard tests of elbow and wrist mobility almost always
> >are
> > asymptomatic or slightly rigid but right side back muscles are
> >dystonic
> > and legs just don't want to move. There is no return of dyskinesia
> > (pallidotomy seems to have eliminated it for good -  we hope) but this
> > depression and freezing is making us pay a heavy toll.
> >
> >Current meds follow:
> >Medicine                  frequency           quantity   daily total
> >Serzone 100mg.       9am & 1pm            1            200mg
> >Sinemet 25/100         every 1 1/2 hr.      1            250/1000
> >Sinemet 25/100cr     every  3 hr.           1            100/400
> >Permax  1mg            every 1 1/2 hr.    1/2            4mg
> >Ativan                        as needed         taking 1 or two a day
> >for anxiety
> >Klonopin .5mg         at night              occasional use for sleep
> >Trazodone 100mg   at night              occasional use for sleep
> >
> > Nancy is 51, PD 20 years
> >
> > Looking for comments from any who are taking Serzone.
> >
> > 1. How many milligrams per day?
> > 2. How long did it take to see the benefits?
> > 3. Have you noticed any changes in the way your other PD meds are
> >working?
> >
> > We are seeing a neurologist, psychiatrist (for the serzone) and
> >getting
> > counseling to get us through this period but without much success. Any
> > ideas/thoughts/help would be appreciated.
> >
> > ---------------------------------
> > Bob Martone [log in to unmask]
> > ---------------------------------
> >
> >
>
> ------------------------------
>
> Date:    Fri, 5 Apr 1996 09:56:41 -0500
> From:    Robert Naylor <[log in to unmask]>
> Subject: re Diphasic Dyskinesias
>
> Hello Everybody:
>         Thanks to those who took time to comment on my wife's problem.
> However, from content of the replies I realized that I should have included
> an explanation of Diphasic Dyskinesias.
>
>         I think that I can best give you a picture of what is involved by
> taking you on an imaginary airplane trip.  Buckle your seat belts and let's go.
>
>        It is a cloudy day.  You take off in the smooth air and you feel that
> this is going to be a great trip. Then suddenly you reach the clouds and
> considerable turbulence occurs until you emerge in the sunshine above the
> clouds.  As long as you keep flying just above the clouds the ride is
> smooth.  But in the distance you see that the cloulds are higher so you have
> to plan ahead so when you arrive at the high clouds you are still above
> them.  Finally you get near the end of your journey.  The clouds are a bit
> lower but as you go through them you encounter extreme turbulence and you
> wonder if the wings with stay on. Finally you come out of the clouds above
> the airport and the flying is again quite smooth.
>
>        Going through the clouds in the morning and evening is the Diphasic
> stage.  It is OK-Bad-OK.
>
> If you try to stay up too long your engine will overheat - this is the
> Evening Dyskinetic phase. If during your flight above the clouds you go too
> high you will be in trouble because your plane does not carry oxygen.  This
> is the peak dose dyskensia phase.
>
>      Of course, if while flying above the clouds you get careless and drift
> down into the clouds you will get into the Diphasic stage again and will
> find that it is not easy to get out.
>
>      This analogy only applies to advanced Parkinsonians.  The path of the
> flight of the airplane is really just a  graph of the sinemet in their
> bloodstream.
>
>      At one time my wife averaged about 4 hours of Dyskinesias per day.  By
> organizing a regime that kept her evenly above the clouds the Dyskinesias
> have been reduced to about 30 minutes per day.   When you come down you have
> to get through the clouds as quickly as possible.  Anything that delays your
> descent makes matters much worse. In fact the evening Dyskinesias can go on
> for 2 to 3 hours if you don't get the pills right.  This actually happens if
> my wife takes sinemet CR  past 3 PM.
>
>      Most of the Parkies on the list are still at the point where blasts of
> sinement can be buffered and stored for later use.  Advanced Parkies have
> virtually no storage. The dopamine in their brain seems to track the sinemet
> in their bloodstream.
>
>      I hope that this posting will clarify my problem with evening diphasic
> dyskinesias.
>
>      In a future posting I will show you how I used EXCEL to determine the
> pill regime that would give a reasonably good day.  The morning diphasic
> dyskinesias are relatively mild and no real problem.  If I could find a way
> to beat the terrible shakes in the evening my wife's day would be great.
>
>     In an April 1992 round table discussion Dr. Lang had this to say about
> diphasic dyskinesias.
> "Well I've stayed away from this group in this discussion because I think
> they would be classified in my hands as advanced patients.  In any event,
> our success in treating patients with diphasic dyskinesias has been very
> mixed.  These patients are very hard to manage in the long term  ............"
>
>     So I am trying to beat this thing.  I guess that fools rush in where
> angels fear to tread !
>
>
>        Robert Naylor CG for Olive (73, PD 19 Yrs)  ([log in to unmask])
>
> ------------------------------
>
> Date:    Fri, 5 Apr 1996 10:37:27 -0500
> From:    Robert Naylor <[log in to unmask]>
> Subject: Correction re Diphasic Dyskinesias
>
>       Hello Everybody:
>
>    It looks as if I really goofed on the use of terms.  Diphasic Dyskinesias
> is a Bad-Ok-Bad response according to some, not the other way around.  So
> the coming down through the clouds may not be the called the Diphasic stage,
> but it happens.  The "Algorithm for Managing Parkinson's Disease Part 3,
> Page 6, about third paragraph describes this coming through the clouds but
> it calls it the diphasic phase. In other parts it doesn't.
>
>    A rose by any other name is still a rose and my wife gets this OK-Bad-OK
> gut wrenching dyskinesia as she winds down at the end of the day.  The rest
> of the day is relatively good.
>
>    So I am still looking for an answer that will help me beat it.
>
>    Sorry if I confused some.
>
>
>    Robert Naylor  CG for Olive (73 PD 19 yrs)  ([log in to unmask])
>
> ------------------------------
>
> Date:    Fri, 5 Apr 1996 11:38:29 -0500
> From:    Bonne Klompstra <[log in to unmask]>
> Subject: Ringing ears
>
> Does anyone have a problem with or a solution for continual ringing in the
> ears or head.
> Happy Easter
>
> Bonne Klompstra         I'd rather have a free bottle in front of me than
> Sombra, Ontario         a prefrontal labotomy.   --Tom waits
>
> ------------------------------
>
> Date:    Fri, 5 Apr 1996 14:27:59 -0500
> From:    mckinney <[log in to unmask]>
> Subject: Re: Ringing ears
>
> >Does anyone have a problem with or a solution for continual ringing in the
> >ears or head.
> >Happy Easter
> >
> >Bonne Klompstra         I'd rather have a free bottle in front of me than
> >Sombra, Ontario         a prefrontal labotomy.   --Tom waits
> >
> >   Hi:   I just read your posting re "ringing ears".   My wife has
> parkinsons' but does not have that problem.   However, I am not a
> parkinsons, patient and I have had ringing ears for twenty five years or
> more. When I first encountered this problem I went to the doctor and he sent
> me for an E.E.G and then to an ear specialist.   Nothing was resolved  and
> there seemed to be no reason for the problem.  Over the years it has
> subsided a bit until a month ago , and now they ring like they did before.
> It is really noticeable at night when things are quiet>   I have not seen a
> doctor about it this time.   It would be interestingto hear from  you if you
> find out any cause or solution.  I'm assuming in your case it developed
> since the onset of PD.  Bob    [log in to unmask]
>
> ------------------------------
>
> Date:    Fri, 5 Apr 1996 16:18:27 -0500
> From:    Bill Romanow <[log in to unmask]>
> Subject: Re: Ringing ears
>
> >>Does anyone have a problem with or a solution for continual ringing in the
> >>ears or head.
> >>Happy Easter
> >>
> >>Bonne Klompstra         I'd rather have a free bottle in front of me than
> >>Sombra, Ontario         a prefrontal labotomy.   --Tom waits
> >>
> >There is a herbal remedy that has helped some people and it is called GINKO
> BILOBA,
> available at most health food stores.   Good luck.
>
> ------------------------------
>
> Date:    Fri, 5 Apr 1996 17:39:11 -0500
> From:    Camilla Flintermann <[log in to unmask]>
> Subject: Re: Ringing ears
>
> Ringing in the ears sounds like tinnitus--a separate problem from PD
> of course, and fairly common. Check with an ear specialist about possible help
> in living with it. (Bummer!)
> Camilla Flintermann,CG for Peter 76/6+ Oxford,OH
> [log in to unmask]
>
> ------------------------------
>
> Date:    Fri, 5 Apr 1996 21:19:26 -0500
> From:    Martin Bayne <[log in to unmask]>
> Subject: YOPD in Upstate New York
>
> A Young Onset Parkinson's Disease (YOPD) Support Group is forming in the
> Albany, New York area. For additional information contact Martin K. Bayne
> at 518-786-7300 Ext. #100 or EMail= [log in to unmask]
>
> You can also contact Susan Reese, Director, APDA YOPD Information &
> Referral Center at 800-223-9776, EMail= [log in to unmask]
>
> ------------------------------
>
> Date:    Fri, 5 Apr 1996 20:13:14 -0500
> From:    "J.R. Bruman" <[log in to unmask]>
> Subject: Re: Delaying taking Sinemet
>
> Authorities seem to disagree on this. The argument for delay is that
> exogenous dopamine will somehow cause deterioration of the host's
> natural production, or that it will hasten the onset of dopamine-
> induced dyskinesia. The argument for starting dopamine immediately
> is that the patient may as well enjoy the benefits as long as possible;
> there is no effect on progression of the disease. Ya pays yer money
> and ya takes yer choice.
> Cheers, Joe
>
>
>
> J. R. Bruman (818) 789-3694
> 3527 Cody Road
> Sherman Oaks CA 91403
>
> ------------------------------
>
> Date:    Fri, 5 Apr 1996 20:38:10 -0500
> From:    Phyllis Riely <[log in to unmask]>
> Subject: Sinemet & Prednisone
>
> Has anyone been on Senemet and Prednisone at the same time?  I was in sad
> shape, unable
> to stand unassisted and my right arm was almost useless.  When I went on
> Prednisone for
> a serious allergic reaction, miraculously the unstableness in standing and
> the unability
> to use my arm were gone.  When I stopped the Prednisone the symptons
> reappeared.  The
> two therapists that were treating me were amazed.  I would like any imput
> from people
> that have had similiar or dissimiliar reactions.
>
> ------------------------------
>
> Date:    Fri, 5 Apr 1996 20:39:57 -0500
> From:    Phyllis Riely <[log in to unmask]>
> Subject: Prednisone and Sinemet
>
> Has anyone been on Sinemet and Prednisone at the same time?  I was in sad
> shape, unable to stand unassisted and my right arm was almost useless.  When
> I went on Prednisone for a serious allergic reaction, miraculously the
> unstableness in standing and the inability to use my arm were gone.  When I
> stopped the Prednisone the symptons reappeared.  The two therapists that
> were treating me were amazed.  I would like any imput from people that have
> had similiar or dissimiliar reactions.
>
> ------------------------------
>
> Date:    Fri, 5 Apr 1996 20:57:42 -0500
> From:    Bruce Anderson <[log in to unmask]>
> Subject: Re: brushing your teeth
>
> One more Parkie-vote for Braun!
>
> Bruce
>
> ------------------------------
>
> Date:    Fri, 5 Apr 1996 21:06:31 -0500
> From:    Barbara Patterson <[log in to unmask]>
> Subject: <No subject given>
>
> From:   "Cooper, Margie - WCOM" <[log in to unmask]>
> Subject: RE:
> Date:   Fri, 5 Apr 1996 12:24:00 -0500
>
> I am also new to this bulletin board.  I seem to get many many answers to
> unknown questions.  I guess when someone sends a reply, the entire list
> gets it.  I have not been around long enough to have read the questions!
>  Perhaps this will get better.
>
> Margie Cooper
> [log in to unmask]
>
>  ----------
> At 02:59  04/04/96 -0500, you wrote:
> >Hi!
> >
> >I am a scientist working on neural transplantation and I have just
> joined
> >your Parkinson bulletin board.
> >
> >I am a little confused over how the bulletin board works.
> >Sincerely,
> >
> >Patrik
> >Patrik Brundin MD PhD
> >Assistant professor of Neurobiology
> >Section for Neuronal Survival
> >Department of Physiology and Neuroscience
> >University of Lund
> >Biskopsg. 5
> >S-223 62 Lund, SWEDEN
> >Work phone +46-46-2227929; fax  +46-46-2223065
> >
> >Home phone and fax +46-46-2119025
> >Minicall: 0740-225057
> >Email: [log in to unmask]
> >----------------------------------------
> >
> Hi:   We were wondering the same thing - very confusing!
> Jack and Joan Martin, Oshawa, Ontario, Canada>
>
> ------------------------------
>
> Date:    Fri, 5 Apr 1996 21:14:20 -0500
> From:    Barbara Patterson <[log in to unmask]>
> Subject: New to the list (fwd)
>
> ---------- Forwarded message ----------
> Date: Fri, 05 Apr 1996 15:38:27 -0800
> From: James W. (Woody) Burkey <[log in to unmask]>
> To: Barbara Patterson <[log in to unmask]>
> Subject: New to the list
>
> I am new to the list. I was diagnosed with PD about 2 1/2 years ago. I am a
> 46 year old truck driver in Cincinnati. My current symptons are a slight
> limp, and the loss of fine motor skills with my right hand. I miss being able
> to write things down quickly. Involuntary movements (Shakes) are also
> beginning on my right side.   All small potatoes compared with some things
> that others are dealimg with.
>
> My current meds are (Daily) Sinemet 25/100 X 4, Amantadine 100mg X 2, and
> Eldepryl 5mg X 2.
>
> I'll mostly be "lunking" around trying to learn what I can about PD and how
> it affects us. I also need to be brought up to date on the various treatments
> being used, and try to figure out where my case fits in.
>
> It is nice to meet all of you.
>
> J. W. (Woody) Burkey
> [log in to unmask]
>
> ------------------------------
>
> Date:    Fri, 5 Apr 1996 23:09:12 -0500
> From:    Robert Naylor <[log in to unmask]>
> Subject: How I reduced Dyskensias.
>
>         My wife Olive (age 73 Pd 19 Yrs) was having an average of 4 hrs of
> dyskinesias per day.  I am presenting a brief summary of how I reduced it to
> 15 to 30 minutes per day.
>
>         1. I obtained figures for the amount of levadopa in the bloodstream
> (the technical term is plasma            concentration) for up to 6 hours
> after a single dose of a given pill.
>
>         2. For the spreadsheet Excel I made macros which contained these
> values. (Any good spreadsheet that             automatically prints graphs
> should work as well.)
>
>         3. I put the time in half hour intervals on the left hand side and
> used the columns for the dose number            and total plasma
> concentration and  average.
>
>         3. In the row representing the dose time and the column representing
> the dose number, I clicked the            macro for that particular pill.
>
>         4. I structured the spreadsheet so that it would add the total
> plasma concentration in each row and put            it in the "totals" column.
>
>         5. I also set things up to put the grand total up to a certain time
> divided by the number of hours up            to that point to get the
> average dosage.
>
>         6. You also need one more column just before the previous two with
> the same times as on the left hand            side to give a base for  plotting.
>
>         7. Specify that you want these three columns plotted, and presto you
> have a graph of the plasma                   concentration throughout the day.
>
>         8. Now  you can shift the pills around anyway you wish and the new
> graph will always appear without you            having to do anything more.
>
>     For a year and a half I printed a graph  every day and pencilled in the
> dyskinesias for that day.
> Eventually I found that there was a level to which the plasma concentration
> should not drop and also a maximum level which should not be exceeded.
> These levels varied somewhat throughout the day.  So I organized my wife's
> pills so that the proper conditions would be met.  Everything was ok except
> the winding down at night.
>
>     Now I just set up a new graph if I am trying a pill change. In that way
> I can avoid unnecessary bad times due to experimenting.
>
>     Having been through all this I can see that someone starting out could
> arrive at the correct answer much more quickly it they understand that the
> pills must be staggered so that the plasma level never gets too high or too
> low.  If you wait till the plasma level has dropped to the minimum before
> you take the next pill, you are in for a rough time.
>
>     Remember that I only have had my wife to work with and she has
> practically no storage capacity. I would like to know how this system would
> be with someone is not so far advanced.
>
>     I would be very glad to work closely with anyone who would like to try
> this system to see if they could get around their problems.  I will give you
> the figures that I used for my macros and I will help you in any other way
> that I can.
>
>
>      Robert Naylor   CG for Olive (73 Pd 19) ([log in to unmask])
>
> ------------------------------
>
> Date:    Fri, 5 Apr 1996 23:32:50 -0500
> From:    Camilla Flintermann <[log in to unmask]>
> Subject: Re: New to the list (fwd)
>
> To Woody Burkey-- if you're in Cincinnati, you might want to check outthe Young
>  Onset PD Group there. You can get in touch through Debbie Mills,nurse
> at U.C. Medical Center (I think). If you look up Dr. Samaha at U.C., a neurosur
> geon who is a PD specialist, you can probably reach her through his office.
> She's a great person, and I believe "runs" the YOPD group. A good way to
> make new friends and learn a lot!  Welcome aboard.
> Camilla Flintermann, CG for Peter,Oxford,OH
> [log in to unmask]
>
> ------------------------------
>
> End of PARKINSN Digest - 4 Apr 1996 to 5 Apr 1996
> *************************************************
>