remove





>November 14  Target Adjournment
>
>If you have already done it , please do it again.
>
>------------------------------
>
>Date:    Sat, 19 Jul 1997 15:50:09 -0400
>From:    [log in to unmask]
>Subject: Udall South Dakota residents
>
>If you are a resident of South Dakota or have family or friends there who
>would be interested in helping to get the Morris Udall Parkinsons disease
>Research bill HR.1260 passed please contact:
>
>The Honorable John Thune (R-at large SD)
>506 Cannon House Office Bldg.
>Washington DC 20515
>
>phone 202-225-2801
>fax 202-225-5823
>
>Both South Dakota Senator Thomas Daschle (D) and Senator Tim Johnson (D) are
>already cosponsors.
>
>The Udall bill #1260 will fund $100 million per year towards Parkinson's
>disease research for up to 3 years.
>
>I visited there office yesterday and they were not aware of having had any
>contact from residents.
>
>------------------------------
>
>Date:    Sat, 19 Jul 1997 16:13:37 -0400
>From:    Judith Richards <[log in to unmask]>
>Subject: importance of specialists...
>
>I agree with Mary. Yesterday my husband and I drove for three hours to meet
>a new (to me) Movement Disorder Specialist. Our only such specialist here in
>London moved to Vancouver last September. I can't emphasize enough how
>important it is to find someone who understands the intricasies of
>Parkinsons, and is willing to take the time to discuss them. This man seems
>so caring...I feel like I've been given a new lease on life. :)
>
>Judith <[log in to unmask]>
>
>>>Mary Rack wrote:
>>> Also, there is widespread agreement that it's VERY impt for a PWP
>>> (person with PD) to see a movement disorders specialist or a
>>> neurologist who specializes in PD.  Folks in isolated areas often make
>>> long journeys once or twice a year to consult with such docs and find
>>> it worthwhile.
>
>------------------------------
>
>Date:    Sat, 19 Jul 1997 16:22:57 -0400
>From:    "Charles T. Meyer" <[log in to unmask]>
>Subject: Re: Antw: Re: Restlessness
>
>Ida,
>
>Most of my books are in my office (which I have been to about twice in
>the past 3 months) so my answers to your questions are from memory. In
>fact I am not sure whether it is spelled "akathesia", "akethesia",  or
>"akithesia".
>
>The descriptions of the symptom are as has been described by others-  an
>"antsy" feeling (like ants are crawling inside your skin". It is a
>feeling that one has to get up and walk around or pace. It differs from
>dyskinesia in that in dyskinesia the movements are involuntary but can
>be surpressed with difficulty while in akathesia the movements are
>totally voluntary but driven by a subjective feeling that is hard to
>resist.  The psychiatric analagy would be a compulsion to was one's
>hands- as the voluntary action is resisted the inner distress becomes
>greater.
>
>Most of the neuroleptic drugs - the phenothiazines (such as
>chlorpromazine or perphenazine) or buterophenones (such as haloperidol)
>can cause akathesia.
>
>I hope this is helpful.
>
>Charlie
>
>Ida Kamphuis wrote:
>>
>> Charles,
>>
>> I did not know the concept of akathesia and neither can I find any
>> description.
>> because it seems to have something in common with my wearing off
>> dyskinesia I
>> am interested to have a desciption of the symptom and the meds who
>> might
>> trigger it. I know it is difficult to decribe things like that and to
>> determine
>> the amount of resemblance visual cues are more usefull.
>> I looked for the meaning of the word and I found the Greek word
>> "kathemai"
>> which means to sit quiet. Akathesia might mean not being able to sit
>> quiet.
>> That seems an understatement when it touches on dysk.
>> The partial similarity of my dysk. and the restless leg syndrome has
>> never
>> impressed me much, because the dysk. does not exist without leva-dopa.
>>
>>                                       Ida Kamphuis
>>                                           Holland
>>
>> > Bruce & Phil;
>> >
>> > Actually Phil is probably more correct in labeling what he
>> experiences
>> > as akathesia.  As a psychiatrist I have run into it quite a bit in
>> the
>> > use of dopamine blocking neuroleptic drugs which at the same time
>> can
>> > produce dystonia + cogwheel rigidity.  I have not run into it with
>> PD
>> > but I presume it occurs since the neuroleptics produce a
>> > pseudoparkinsonism.  What medications were you taking when it
>> started.
>> > Are you sure it is not dyskinesia- which has a lot of similarities
>> to
>> > akathesia)?
>> >
>> > CHARLES T. MEYER, M.D.
>> > MADISON, WISCONSIN
>
>--
>**********************************************************
>CHARLES T. MEYER, M.D.
>MADISON, WISCONSIN
>**********************************************************
>
>------------------------------
>
>Date:    Sat, 19 Jul 1997 16:28:37 -0400
>From:    Bruce Warr <[log in to unmask]>
>Subject: Re: Mental fog
>
>-->>>>>>> Next Section <<<<<<<
>Content-Type: Text/Plain; charset=US-ASCII
>
>Mental confusion is cited in the liturature as being one of the
>side-effects of many drugs used in the treatment of PD. I used to
>experience it (along with nausea and other side-effect) fairly
>frequenly, but as time has passed, the side-effectsd disappeared
>(sometimes, it seemed, along with the main-effects!!).
>
>The most extreme case I encountered was when I lost my medicine and
>went for two days without. I got a new Rx on noon of the 3rd day and
>took my normal dosage. With-in three hours I was not only mentally
>fogged in, I was suffering from a total disconnect between objects
>and labels.
>
>For instance, if I saw a three-sided, closed object, I knew that I
>knew the name for it but could not remember what it was.. At the
>same time, (I would realize later), in my label memory bank would be
>one called "triangle", but the association between the object and
>its label was missing. I don't even remember whether or not I
>remembered my name. The only thing that kept me from screaming up
>the walls was a strong sense of self-identity--I was still me even
>if I didn't know who me was.
>
>I don't know if there is a medical term for this condition, but I
>think of it as being a mental disassociation. Most people have
>experienced very minor instances of this when they cannot remember
>the name of something ("my mind just drew a blank")
>
>Bruce
>55/9
>Sinemet CR and Mirapex
>
>------------------------------
>
>Date:    Sat, 19 Jul 1997 16:36:10 -0400
>From:    "Charles T. Meyer" <[log in to unmask]>
>Subject: Hospitalization
>
>Listfriends (or list sibs)
>
>On Monday (pending bed availability) I will be entering
>Rush-Presbyterian-St. Lukes Hospital in Chicago to switch from
>bromocryptine and sinemet to pramipexole and sinemet.  Hopefully I will
>regain my ability to walk ( which I lost about 3 months ago) without
>freezing every other step.  I also will be receiving rehab therapy which
>I badly need.
>
>The last posts I will be able to answer will be able to respond to will
>be tomorrow's (except for you Aussies)
>
>I'll be back in 1-2 weeks.
>
>Charlie
>--
>**********************************************************
>CHARLES T. MEYER, M.D.
>MADISON, WISCONSIN
>**********************************************************
>
>------------------------------
>
>Date:    Sun, 20 Jul 1997 17:23:13 -0400
>From:    Kathy Kunz <[log in to unmask]>
>Subject: Re: MSA diagnosis
>
>My week for mistakes.  I reread  the material John Cottingham sent me
>about MSA and it seems I misunderstood it the first time.   MSA
>encompasses Shy-Drager Syndrome, striatonigral degeneration and
>olivopontocerebellar atrophy (SDS, SND, & OPCA).  I thought originally
>that it was a separate disease from these three and that there were yet
>three more variants of it--how many flavors can we take?  I still seem to
>lack almost all the distinguishing features of those three--back to
>researching.
>
>Meanwhile, I'd still like to hear from any MSA's among you about anything
>that helps.  Thanks.
>
>Kathy Kunz
><[log in to unmask]>
>
>------------------------------
>
>Date:    Sat, 19 Jul 1997 17:34:23 -0400
>From:    [log in to unmask]
>Subject: Re: speed of onset
>
>Kathie Tollifison,
>Yes, where are they getting all that energy?  I keep forgetting, I can't do
>the things I used to.  I would guess the super exercisers just haven't been
>hit by the
>fatigue fairy yet.  I think of how nice it would be to take a walk or do some
>shopping or volunteer work and then I get up on my feet and nearly fall down
> from my bad balance.  Everything tires me out.
>I was playing tennis two years ago and worked a full time job.  It's
>impossible now.  Glad I didn't complain about all those PDrs that weren't
>trying and needed to stay busy!  Ha.  I sleep 8-9 hours a night too.
> Everybody is affected differently.
>
>Patricia
>60/3 yrs.
>
>------------------------------
>
>Date:    Sat, 19 Jul 1997 17:42:41 -0400
>From:    "Edie Luther." <[log in to unmask]>
>Subject: Re: Hospitalization
>
>I wish you the best of luck, Charlie
>
>Edie Luther
>
>------------------------------
>
>Date:    Sat, 19 Jul 1997 17:43:06 -0400
>From:    Joao Paulo Carvalho <[log in to unmask]>
>Subject: Re: speed of onset
>
>[log in to unmask] wrote:
>
>> Kathie Tollifison,
>> Yes, where are they getting all that energy?  I keep forgetting, I
>> can't do
>> the things I used to.
>
>Have you checked the possibility that it may be caused by some side
>effect of some med you have been taking ?
>
>Regards,
>
>   +----| Joao Paulo de Carvalho   |------ +
>   |         [log in to unmask]     |
>   +--------| Salvador-Bahia-Brazil |------+
>
>------------------------------
>
>Date:    Sat, 19 Jul 1997 17:49:51 -0400
>From:    Dick Swindler <[log in to unmask]>
>Subject: Re: Hospitalization
>
>Charlie -
>
>Our hearts are with you during your upcoming hospitalization.  You'll be
>sorely missed while you're off line.  We hope to hear from you soon, and to
>learn that the pramipexole has been the answer for you.    Warmly, Margie and
>Dick Swindler
>
>------------------------------
>
>Date:    Sat, 19 Jul 1997 17:54:40 -0400
>From:    Germaine <[log in to unmask]>
>Subject: Re: importance of specialists...
>
>Hello Judith,
>
>I'm so happy to hear that you've found a caring doctor. And you sound so
good!
>
>Love,
>Germaine
>
>At 04:13 PM 7/19/97 -0400, Judith Richards wrote:
>>I agree with Mary. Yesterday my husband and I drove for three hours to meet
>>a new (to me) Movement Disorder Specialist. Our only such specialist here in
>>London moved to Vancouver last September. I can't emphasize enough how
>>important it is to find someone who understands the intricasies of
>>Parkinsons, and is willing to take the time to discuss them. This man seems
>>so caring...I feel like I've been given a new lease on life. :)
>>
>>Judith <[log in to unmask]>
>
>------------------------------
>
>Date:    Sat, 19 Jul 1997 18:22:30 -0400
>From:    [log in to unmask]
>Subject: Re: clinical depression [cd] defined
>
>Janet,
>That was you that had the informative letter on depression.  I was going
>through the list mail and thought it looked interesting and it was.  How much
>I would like to stop taking my anti-depressant but I'm somewhat pre-disposed
>to feeling low,
>after talking with my brother about he and I and the relatives.
>I'm glad you have found some of the answers.  Since I've retired, a weight
>has been lifted from my chest.  In fact I don't know how I lasted as long as
>I did.  Getting up at six, driving 25 miles, working with Special needs high
>school students, trying to stay helpful and positive after hearing their sad
>stories- no breakfast. holding a job after school, (so they fell asleep in
>class) abuse, dsylexia, learning disabilities, need for glasses, pregnancy,
>etc.,etc.
>My adopted daughter was diagnosed with a bi-polar disorder.  She is like two
>different people when she's up or down.  Doesn't always take her medicine
>either.
>How is Stubby?  Any more dreams when looking out the window?  My Bruce got so
>upset by the rug cleaners coming in the house last week I felt movement in
>the bottom of the recliner I was sitting in.  Yes, it was my brave kitty,
>moving around underneath me.  I was afraid to move, thinking I'd squeeze him
>flat, but he was alright.  He came out when they left and decided to stay on
>the top of my lap this time.
>Will you be taking the Mirepex?  I'm supposed to get a prescription soon.
> Hope springs eternal!
>
>Patricia
>60/3 yrs.
>
>------------------------------
>
>Date:    Sat, 19 Jul 1997 18:35:13 -0400
>From:    [log in to unmask]
>Subject: Re: speed of onset
>
>Joao,
>I keep asking my neurologist why I'm so tired all the time.  She explains my
>fatigue as a symptom of PD.  I am taking Sinemint CR, Amantadine, and Zoloft.
>Thanks for your reply.
>
>Patricia
>60/3 yrs.
>
>------------------------------
>
>Date:    Sat, 19 Jul 1997 18:35:46 -0400
>From:    Arthur Hirsch <[log in to unmask]>
>Subject: Re: Hospitalization
>
>Charlie,
>
>I had never read much about the efforts going re Parkinsonism at
>Rush-Presbyterian-St. Lukes Hospital in Chicago, but last week I was among
>those priveleged to hear Jeffrey Kordower, Ph.D., of subject hospital speak
>at the Parkinson's Public Policy Forum in Washington, DC.  Not only was his
>presentation arguably the best of many excellent presentations, but he took
>time off later to visit Capitol Hill with our advocates as well.
>
>If this man's care speaks for the care of the hospital, you are in
>excellent hands.  It appears that he is in research, not in patient care,
>but I suggest that you make it a point to meet him if you can.
>
>My wish is for a recovery so complete that you won't have the time for this
>list that you have lavished on us in the past months - a loss for the list,
>but a gain for you.
>
>Art
>
>
>At 04:36 PM 7/19/97 -0400, you wrote:
>>Listfriends (or list sibs)
>>
>>On Monday (pending bed availability) I will be entering
>>Rush-Presbyterian-St. Lukes Hospital in Chicago to switch from
>>bromocryptine and sinemet to pramipexole and sinemet.  Hopefully I will
>>regain my ability to walk ( which I lost about 3 months ago) without
>>freezing every other step.  I also will be receiving rehab therapy which
>>I badly need.
>>
>>The last posts I will be able to answer will be able to respond to will
>>be tomorrow's (except for you Aussies)
>>
>>I'll be back in 1-2 weeks.
>>
>>Charlie
>>--
>>**********************************************************
>>CHARLES T. MEYER, M.D.
>>MADISON, WISCONSIN
>>**********************************************************
>>
>>
>Arthur Hirsch [] [log in to unmask] [] Lewisville, TX
>  ____________________________________________
>
>               Always Remember This:
>     Happiness Is Right, So Choose Happiness
>  ____________________________________________
>
>------------------------------
>
>Date:    Sat, 19 Jul 1997 16:17:16 -0400
>From:    jhstarr <[log in to unmask]>
>Subject: Re: GH3./OPC/SJW
>
>[log in to unmask] wrote:
>>
>> In a message dated 97-07-12 16:23:14 EDT, [log in to unmask] (jhstarr)
>> writes:
>>
>> << I would suggest St.John's Wort before the GH3, if you want a
>>  natural product. There is more known about SJW.-- BY THE WAY-- If any of
>>  you listmates have tried SJW, I would be interested in knowing your
>>  results.                                Jerry Starr
>>   >>
>>
>> GH3 sounds a lot like OPC as far as the things it has been reported to
>> help..I've never heard of GH3, where can you find it?  Also I've been
looking
>> for SJW, but ever since the news on 20/20 all the shelves I've looked on
are
>> out of it.  Anyone had any luck finding it?
>>
>> Sue, in Mass.  daughter of Rocky 7?/14
>
>DEAR SUE:  I realize SJW may be a little hard to find at the present
>time, but keep checking at the health food stores. The GH3(Gerovital H3)
>should also be available at health food stores and through mail order.
>One mail order company that makes it is the Gero-Vita Co., but there are
>also others.
>I would reiterate that these should be taken only with your doctors
>knowledge and approval.                     Jerry Starr, Rph
>
>------------------------------
>
>Date:    Sat, 19 Jul 1997 18:51:11 -0400
>From:    "W.H. Beust" <[log in to unmask]>
>Subject: pycnogenol
>
>My father, Walter, is 84 years old and takes Eldepryl and Sinemet.  My
>mother and I have experienced benefits from an antioxidant called
>pycnogenol (proanthocyanidin from the Maritime pine tree) and we have
>finally talked Dad into giving it a try.  But he is very skeptical.  He
>is building up slowly, as anyone just starting out should, but says he
>feels worse, not better and will stop if he doesn't start to feel better
>soon.
>
>We know from personal experience and the experience of others, that a
>"cleansing" of the body occurs when first taking this compound, and it
>is not unusual for someone to feel worse at first.  Loose stools are
>also a common side effect.  But these soon go away and, after reaching
>the full dosage, the benefits start to become obvious.  In my case, my
>ADD-type of fuddled brain cleared and I was much more able to think
>clearly.  My arthritis and carpal tunnel left.  I felt better than I had
>in a long time.
>
>Dad would be much more likely to stick with pycnogenol if he knew
>another PD person out there had tried it and had benefitted.  But there
>is a dearth of information on the subject of pycnogenol and PD.  Has
>anyone out there tried this?  We would so appreciate an answer.
>
>Thank you.       Audrey Beust McMurray
>
>------------------------------
>
>Date:    Sat, 19 Jul 1997 15:03:43 -0400
>From:    Phil Tompkins <[log in to unmask]>
>Subject: Re: Restlessness
>
>I found the correct spelling of the term as well as its Greek
>origin.
>
>akathisia - from the prefix "a" meaning not (as in "atonal"), and
>"kathikso", to sit down.  Unfortunately, this denotes an action,
>not a sensation, so it doesn't express the real meaning.
>
>It's frustrating not only to experience this sensation, but also to
>have to describe it to people who never themselves felt it, and that
>is the vast majority, a good number of doctors included.  It's one of
>those weird, not right sensations that we may have trouble finding
>adequate words for when we are trying to say what's wrong with us.  I
>recall once having a different, non PD related, weird sensation (too
>much insulin), which I could not describe in such a way as to convey
>that there was anything wrong with me except in my imagination.
>
>There seem to be standard terms for describing many of the symptoms
>which are subjective sensations, in this case, "restlessness" or
>"akathisia", and if we don't happen to use the right words, we may
>not be heard.  It pays to learn and use the vocabulary of one's
>condition.
>
>Phil T.
>
>------------------------------
>
>Date:    Sat, 19 Jul 1997 19:09:10 -0400
>From:    Milton E McLain <[log in to unmask]>
>Subject: Re: Hospitalization
>
>Good Luck, Charles!
>
>Milton McLain
>[log in to unmask]
>
>On Sat, 19 Jul 1997 16:36:10 -0400 "Charles T. Meyer"
><[log in to unmask]> writes:
>>Listfriends (or list sibs)
>>
>>On Monday (pending bed availability) I will be entering
>>Rush-Presbyterian-St. Lukes Hospital in Chicago to switch from
>>bromocryptine and sinemet to pramipexole and sinemet.  Hopefully I
>>will
>>regain my ability to walk ( which I lost about 3 months ago) without
>>freezing every other step.  I also will be receiving rehab therapy
>>which
>>I badly need.
>>
>>The last posts I will be able to answer will be able to respond to
>>will
>>be tomorrow's (except for you Aussies)
>>
>>I'll be back in 1-2 weeks.
>>
>>Charlie
>>--
>>**********************************************************
>>CHARLES T. MEYER, M.D.
>>MADISON, WISCONSIN
>>**********************************************************
>>
>
>------------------------------
>
>Date:    Sat, 19 Jul 1997 19:34:29 -0400
>From:    Sue Whitmore <[log in to unmask]>
>Subject: Re: speed of onset
>
>Ken,
>
>What exactly is DHEA?  Where do you buy it and how expensive is it?  Does it
>interfere with PD meds?  Thanks.
>Sue W.  45/2
>
>------------------------------
>
>Date:    Sat, 19 Jul 1997 16:11:47 -0400
>From:    Aaron Schwartz <[log in to unmask]>
>Subject: Re: Hospitalization
>
>Dr. Charles -
>
>Good luck and god speed.  I shall offer a prayer for your good health
>and a speedy recovery.
>
>"A psychiatrist is a person who will listen to you, as long as you don't
>make sense."       -Milton Berle
>
>
>Stephan 53/7
>
>------------------------------
>
>Date:    Sat, 19 Jul 1997 21:27:42 -0400
>From:    Brian Collins <[log in to unmask]>
>Subject: Re: question?
>
>On Mon 14 Jul, ((JackLyn)) wrote:
>> This is such a great group, even with all the nitpicking.  :)  Just wanted
>> to know, what do you mean when you talk about on and off times?  Thanks,
Jackie
>>
>>
>>
>Hello Jackie,  I cannot see a reply to your question, so I thought I would
>write one.
>
>In the early stages of PD, things tend to happen slowly and progressively,
>and it is sometimes difficult to see that there are in fact two areas of
>operation: 1: Where you have taken insufficient medication (Sinemet or
>Madopar), and are showing the classic Parkinson's tremor  (or stiffness
>etc - whatever is your particular response to PD) This is defined as the
>OFF state.
>
>With the passing years, as it becomes more and more difficult to find a
>suitable dosage of Sinemet/Madopar which will relieve the tremor (etc)
>symptoms without at the same time triggering symptoms which are
>characteristic of the overdosed condition . That is, random uncoordinated
>movements of anything  up to and  included1ng  the whole body, or
>sometimes just very stiff muscles. Doctoes and patients alike tend to
>think of the whole setup as one where it is like a switch, and you are
>either under dosed, or ovwrdosed  a lot of the time, and you can slip from
>one condition to the other, just like flicking a switch switch.
>
>The good news is that I have found it possible to effectively hover in the
>area between under and overdosed conditions, with the result that (almost)
>normal functioning can be achieved. Some of you may know that I wrote a
>computer program to enable me to find that balance.  I can supply more
>information to interested people - just let me know.
>
>
>
>
>--
>Brian Collins  <[log in to unmask]>
>
>------------------------------
>
>Date:    Sat, 19 Jul 1997 22:01:49 -0400
>From:    Barbara Mallut <[log in to unmask]>
>Subject: FW: Hospitalization
>
>Charlie...
>
>Break a leg!   Hmmm....(thinking).... naw, that's wrong.   HEY-score one for
>the Gipper!  Hmmm... (thinking)... WRONG!  Uhhhh... knock 'em dead?  Wrong
>again... OH HECK!   TONS of success, Charlie! <smile>
>
>BIG huggle atcha...
>
>Barb Mallut
>[log in to unmask]
>[log in to unmask]
>
>-----Original Message-----
>From:   Parkinson's Information Exchange  On Behalf Of Arthur Hirsch
>Sent:   Saturday, July 19, 1997 3:36 PM
>To:     Multiple recipients of list PARKINSN
>Subject:        Re: Hospitalization
>
>Charlie,
>
>I had never read much about the efforts going re Parkinsonism at
>Rush-Presbyterian-St. Lukes Hospital in Chicago, but last week I was among
>those priveleged to hear Jeffrey Kordower, Ph.D., of subject hospital speak
>at the Parkinson's Public Policy Forum in Washington, DC.  Not only was his
>presentation arguably the best of many excellent presentations, but he took
>time off later to visit Capitol Hill with our advocates as well.
>
>If this man's care speaks for the care of the hospital, you are in
>excellent hands.  It appears that he is in research, not in patient care,
>but I suggest that you make it a point to meet him if you can.
>
>My wish is for a recovery so complete that you won't have the time for this
>list that you have lavished on us in the past months - a loss for the list,
>but a gain for you.
>
>Art
>
>
>At 04:36 PM 7/19/97 -0400, you wrote:
>>Listfriends (or list sibs)
>>
>>On Monday (pending bed availability) I will be entering
>>Rush-Presbyterian-St. Lukes Hospital in Chicago to switch from
>>bromocryptine and sinemet to pramipexole and sinemet.  Hopefully I will
>>regain my ability to walk ( which I lost about 3 months ago) without
>>freezing every other step.  I also will be receiving rehab therapy which
>>I badly need.
>>
>>The last posts I will be able to answer will be able to respond to will
>>be tomorrow's (except for you Aussies)
>>
>>I'll be back in 1-2 weeks.
>>
>>Charlie
>>--
>>**********************************************************
>>CHARLES T. MEYER, M.D.
>>MADISON, WISCONSIN
>>**********************************************************
>>
>>
>Arthur Hirsch [] [log in to unmask] [] Lewisville, TX
>  ____________________________________________
>
>               Always Remember This:
>     Happiness Is Right, So Choose Happiness
>  ____________________________________________
>
>------------------------------
>
>Date:    Sat, 19 Jul 1997 23:11:53 -0400
>From:    Camilla Flintermann <[log in to unmask]>
>Subject: Re: Hospitalization
>
>Good luck with the hospitalization, Charlie Meyer--and hurry back!
>We need you and will miss you!
>
>Camilla Flintermann, CG for Peter, 78/7, Oxford,Ohio
>[log in to unmask]
>*   *   *   *   *   *   *   *   *   *   *   *   *   *
>"Ask me about the CARE list for PD caregivers!"
>*   *   *   *   *   *   *   *   *   *   *   *   *   *
>
>------------------------------
>
>Date:    Sun, 20 Jul 1997 15:17:36 -0400
>From:    ron d <[log in to unmask]>
>Subject: ops
>
>Dear Barbara & List Members,
>As a new member, let me introduce myself.
>My name is Ronnie Discombe and I was diagnosed as having
>PD in Feb 1993.  I live in Melbourne, Australia.
>Only during the past year have the ops for PD been performed
>in Australia.  Therefore there is very little follow-up
>on the results after a couple of years has passed by.
>Has anybody on the list had the operations and could pass on any
>information on this subject?
>Ronnie Discombe.  [log in to unmask]
>
>------------------------------
>
>Date:    Sat, 19 Jul 1997 23:21:05 -0400
>From:    Camilla Flintermann <[log in to unmask]>
>Subject: Peter's new symptoms
>
>Friends, maybe someone can tell us if they have had similar symptoms
>to a couple which really are bugging Peter of late:
>Spasms of tongue biting--different from the unconscious chewing of
>the tongue that he has had for months, these are sharp, sudden bites that
>hurt, and even wake him up at night when it happens in his sleep. It seems
>somewhat comparable to a jerk or dyskinesia.  The sideways,rhythmic jaw
>movement which he developed when there was a slight increase in Sinemet,
>seems to have disappeared when I cut back to the lower dose. (The increase
>was only from 20/200 (2-10/100s) to 25/250 in 3 hrs,but that may have put
>him,finally, overthe edge to dyskinesia.
>
>The other symptom is different from a regular PD tremor--which he has
>almost none of--and is a violent trembling or shaking hard to control,
>which occurs when he first rises from a seat, and gets worse if someone
>grabs and tries to help/hold him.  It's a "wild bouncing up and down" which
>makes him panicky, and even more so if anyone tries to hold onto him. It's
>scary to watch, as it seems he will fall over--but it soon stops if he can
>get control of it himself, stabilize with a walker, etc. So far, he hasn't
>fallen, however.
>
>I have posted about our experience with Aricept, which unfortunately
>didn't help him, and apparently added insomnia,nausea, and anorexia to
>his symptom life,till we stopped it. Has anyone else had this experience with
>this med, whichso many have found helpful?  He's now eating again a bit
better
>and I hope will regain at least some of the 20 lbs he lost!
>
>Any suggestions, comments, will be  of interest--we see his neuro on
>Monday, and will ask for a Mirapex RX .
>
>Camilla Flintermann, CG for Peter, 78/7, Oxford,Ohio
>[log in to unmask]
>*   *   *   *   *   *   *   *   *   *   *   *   *   *
>"Ask me about the CARE list for PD caregivers!"
>*   *   *   *   *   *   *   *   *   *   *   *   *   *
>
>------------------------------
>
>Date:    Sat, 19 Jul 1997 23:14:40 -0400
>From:    Baldwin Robertson <[log in to unmask]>
>Subject: Computer program for (almost) normal functioning
>
>Brian,
>You said:
>"The good news is that I have found it possible to effectively hover in the
>area between under and overdosed conditions, with the result that (almost)
>normal functioning can be achieved. Some of you may know that I wrote a
>computer program to enable me to find that balance.  I can supply more
>information to interested people - just let me know."
>
>Yes, I would be very interested.
>
>Baldwin Robertson
>
>------------------------------
>
>End of PARKINSN Digest - 19 Jul 1997
>************************************
>