>Date:    Wed, 3 Apr 1996 19:27:57 -0500
>From:    [log in to unmask]
>Subject: Freezing, Falling, OFF
>
>For Doug McCorkle's Mother
>
>You wrote the following;
>
>Question from Mom:
>Mom's main problem is "freezing" during her off times.  During these times,
>she finds that she can sometimes accomplish small tasks (walking across the
>room, for example) with a great expenditure of time and effort OR she can
>sit back and wait until her medicine kicks in and get a lot more done with
>less effort.
>
>The question is: Is it better to rest up and wait for the medicine (it's
>certainly more comfortable) or is there some benefit in fighting the brady-
>and akinesias ?
>
>ANSWER:  I honestly believe that OFF time is harmful to the human system.  We
>would always like to be ON since that is as close to normal as we can be.
> When we are normal, all systems are operating in an acceptable range.  When
>we are OFF, one or more system is operating outside of an acceptable range.
> This puts stress on one or more systems.  I feel it as bradykinesia,
>rigidity, dyskinesia, dystonia and many other symptoms.  Operating in this
>unacceptable range must cause harm.  If one considers that those with PD
>prior to today's medications had a shortened life span, need I say more.
> Today, the expected life span of those of us with PD is about normal. I can
>only attribute that to medication that keeps us out of the OFF and ON with
>dyskinesia states as much as possible.
>
>Vision can play a major role is helping one out of OFF states.  Freezing is
>the inability to initiate movement.  Often movement can be made backwards.
> Or often movement can be made up or down a stairway.  Yet, when confronted
>with walking forward, the feet seem to be glued to the floor.  This freezing
>seems to happen most often when passing through a door way, walking down a
>narrow hallway, attempting to turn around in a confined area, and other
>similar situations that pose a change of "environment" on us.  A relatively
>simple model might be proposed that goes like this:
>
>We are walking in a normal way when our eyes detect a environmental
>requirement to change this normal walk.  The signal sent by the eyes to the
>brain is really two signals  (1) tells the feet to stop in their current
>place until they are told otherwise  and (2) tells the brain to come up with
>an alternate walk pattern due to a perceived environmental requirement.  In
>the normal brain system, these two signals are acted on instantaneously.  The
>signal to stop to the feet arrives just before a new signal is received
>altering the walk pattern.  The corrections come fast enough that no
>noticeable stop ever happens.
>
>The case for PD is slightly different.  The signal to stop is received and
>acted on.  The signal for modification is either delayed or never is given.
> The net of a perceived change requirement is freezing.  In the worst case,
>the feet freeze and the body continues causing one to fall.  Now that is
>serious.
>
>Somewhat similar to freezing is akinesia.  In akinesia, one is unable to
>initiate movement.  This is the second half of freezing.  Once one has
>stopped (freezing) the next thing is to initiate movement.  If this is
>impossible, it is called akinesia.  As stated earlier, often the patient can
>walk backwards, up and down stairways, but not forwards.  Looking a little
>closer at balance, when walking backwards, the center of balance or
>equilibrium does not change.  In other words, walking backwards is similar to
>just standing.  The same thing is also true when going up and down stairways.
> Our center of balance stays almost at the same place as when standing.  Now
>consider walking forward.  The first thing one notes is the body must lean
>forward followed by a foot to catch the forward fall.  In a way what is
>happening is the body is thrust forward and the center of equilibrium gets
>pushed forward.  If nothing else happens we will fall on our face.  Thus a
>foot follows the lean and if we hold the lean, another foot must follow, and
>"like magic" the human is moving on two feet.  Note what had to happen.  (1)
>The body had to be put at risk and (2) a foot had to be set forward to
>prevent the fall.  A simple definition of akinesia might be a time when the
>brain considers the risk of body harm too high.  The problems of akinesia and
>freezing are most profound when in an OFF state.
>
>One possible way around some of the OFF time problems is to create a "visual"
>pathway in areas prone to freezing.  By this I mean, put marks on the floor
>and step over them when walking.  For many, this reduces the severity of the
>visual signal to stop.  In some people, the need to stop is gone and it seems
>like "old times" again.  If you saw the movie, "Awakenings," Lucy needed the
>floor patterned else she stopped at the edge of the pattern.
>
>Now a little on the mechanics of this procedure.  Testing the patient
>response.  Using an ordinary deck of playing cards, place a card at about 18"
>intervals down a hallway, through a door way or where ever this problem of
>freezing happens.  You might find that 18" is too big for very small people,
>and too small for large people.  The intent is to have the patient step over
>the marks, thus the cards should be placed at normal walking stride.   Now it
>may be necessary to place more than one card to form a mark.  What ever works
>is the answer.  Be sure the marks are placed at normal stride and not at slow
>or reduced stride.
>
>Now that the marks on down, the only thing left is to have the patient try
>walking over the marks.  This is a new perceived visual pattern requiring a
>little learned effort.  Generally walking over the marks only takes a few
>tries before the patient automatically starts to use the marks as visual
>cues.
>
>What is expected?  (1)  You may have difficulty getting the patient to stop
>walking over the marks.  The reason is the patient is feeling more than just
>the ability to walk in areas that used to cause problems.  The walking
>loosens the muscles and you should observe arm swing, knee bending, foot
>lifting, facial expression etc.  All of these may become normal without
>medicine.  Surprised?  (2)  It does not work for everyone with freezing and
>akinesia.  But remember, it may take some getting use to.  The cues are new
>and this may require learning a new skill.  It may be better to leave the
>patient alone to explore at their pace what is happening.  Often the patient
>will say, "I don't feel anything new, it must not be working!"  You, however,
>can see the difference.  (3) It the marks are making a difference, the use of
>masking tape (the kind that is colored and is of the long staying without
>permanent damage used be used.  This may be purchased at most hardware stores
>for about $5:00 a roll or less.
>
>Now that the house has all these marks, how is the patient doing?  I hope
>much better.  I know for one lady who would fall about 2 or 3 times a day,
>she hasn't fallen in her home since  the marks were put down.  For another,
>the marks are so enabling that and they wondered why it hadn't been stated
>before.  What do you have to lose?  A half hour to try something maybe.  That
>is cheap compared to a fall.  Let me know what happens.
>
>Regards,
>Alan Bonander, age 56, PD 12 years, infusion, pallidotomy.
>
>PS: Much of the material above is from Tom Riess in conversations,
>demonstrations and reading papers.
>
>------------------------------
>
>Date:    Wed, 3 Apr 1996 20:20:23 -0500
>From:    Ron Reiner <[log in to unmask]>
>Subject: Accumlative Effect of Sinemet?
>
>Hi:
>
>I have a general question that I hope folks can shed some light on.  My
>understanding is that after about five years of Sinemet therapy, many PDers
>begin showing serious side effects.  You read about them all of the time
>here.  My question is whether these reactions are due to some accumulated
>toxins in (i.e., damage from) the Sinemet.  Or, are these side effects
>simply due to the fact that after five years the degradation due to PD
>itself make the Sinemet more volatile?
>
>Let me pose this question in different ways:
>
>1.  If I start taking sinemet 7 years after diagnosis, can I expect the side
>effects to show up immediately or will it take another five years?  Or will
>it take two years?
>
>2.  If PDer A takes half the dose of PDer B, will PDer A take longer to show
>the side effects?  If one train leaving Chicago at 60 miles per hour and
>another leaving Baltimore .................
>
>3.  I (as well as a lot of other recent diagnosees ) am making every attempt
>to delay starting Sinemet as long as possible.  Am I deluding myself?
>
>Have there been any formal studies on this issue?
>
>                Ron Reiner ([log in to unmask]) 48 + 7mos PD
>
>------------------------------
>
>Date:    Wed, 3 Apr 1996 20:38:30 -0500
>From:    Joan Martin <[log in to unmask]>
>Subject: Re: PD article, Sun City Arizona
>
>At 08:34  02/04/96 -0500, you wrote:
>>Thank you for sharing which other  diseases etc beenefit from PD researrc h h
>>. Will get to work !!
>>
>>
>>mhd
>>Hi- just wondering what the Udall Bill is and how it will help Shy-Dragers
>Syndrome folks.  thanks
>Jack and Joan Martin, Oshawa, Ontario, Canada
>
>------------------------------
>
>Date:    Wed, 3 Apr 1996 22:20:28 -0500
>From:    [log in to unmask]
>Subject: new member
>
>subj: new mwmber
>date: 96-04-03
>from: [log in to unmask]  (Rosemary Russell)
>
>My name is Rosemary Russell & I am a new member.  I was diagnosed with PD
>about 2 yrs. ago at age 46, but had symptoms for 3 years before.  My
>situation seems to be unique in that I seem to have little in common with
>others in my support group--most are quite older & have caregivers.  I am a
>divorced single mother of three sons--two are grown & one still at home, a
>senior in high school.  I had just completed graduate school when I was
>diagnosed, & had planned on a career.  Now I don't know if I will be able to
>have one or not.  My worst symptom (according to my neurologist) is tremor of
>the right arm.  To me, my most disabling feature is fatigue/weakness.  I used
>to be very energetic & active--showed horses in jumping competition, active
>in community, dated, etc...  Now everything's an effort, and I don't do much.
> I take a water therapy class four times a week and it has helped me a
>lot--but not the fatigue.  I take a very low dose of sinemet and parlodel 3
>times a day, eldepryl  twice a day, 2000iu. of vitamin E,  effexor (37mg.
>twice a day), and estrogen.  My neurologist wants me to have a thalamotomy
>this year.  I am going to Emory in Atlanta in May for a 2nd opinion on the
>surgery.  My  questions are:   Does anyone know of anything that will help
>the fatigue/weakness?
>         Has anyone had a thalamotomy, & what were the results?
>         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.  Anyone with similar probs. can write me at my e-mail
>address:
>                                                          [log in to unmask]
>                                                            Rosemary Russell
>
>------------------------------
>
>Date:    Wed, 3 Apr 1996 22:40:18 -0500
>From:    Connelly <[log in to unmask]>
>Subject: Regretably
>
>Please remove my name from the listserve, at least for the time being.
>The wife of the fellow that I was connected for has suffered a bad
>stroke at the young age of 64 and can't help him with any of this.  I
>was really hoping to get them interested in computers and the wonderful
>resources your listserve offers, but that is not to be at this time.  If
>she is able to absorb any of this, I'll reconnect, but for now, she
>needs to learn to speak again, and eat with her left hand, etc.
>
>Until then, I will relieve my incoming mail of the excess usage.
>
>I wish you all the best of everything with your quest to cope with PD.
>
>God Bless all of you!
>
>Roxie
>
>------------------------------
>
>Date:    Wed, 3 Apr 1996 23:22:32 -0500
>From:    "Mike and Dione Duran (by way of gordon seese <[log in to unmask]>)"
>         <[log in to unmask]>
>Subject: Re: new member
>
>        Do you have access to Home Health Services? This agency, which is
>covered by Medicare, was created to help keep people intheir homes.
>        They seem to be everywhee. One of the nurses told me she visted
>"littleoldladies" every day. A friend, who actually works for a 90 year old
>lady, has them do her oxygen. We utilized everything two years ago, the bath
>lady, the social service lady--who listened to me worry-- the nurses. I even
>called one day and she came early and "intervened"--paged the Doctor. They
>have liss of responsible people you can employ.
>        Anyway, this was after a dreadful accident and before Parkinson
>surgery- awonderful service.  TheaSeese--CG for Gordon
>
>------------------------------
>
>Date:    Wed, 3 Apr 1996 23:30:48 -0500
>From:    gordon seese <[log in to unmask]>
>Subject: Re: need more than eldepryl for 71/2 woman
>
>        Why not try one presciption of themost likely?Gordon finds amatadine
>helpful forbalance. I suggest a small prescription as she may have problems.
>many have differnt reactions, so don't be discouraged.At 10:59 PM 4/2/96
>-0500, you wrote:
>>My mother 71/2 is currently on eldpryl but would like to add another drug
>>as she is starting to have:
>>balance problems
>>slowness
>>cramping of left foot
>>
>>in addition to her tremor.  We're wondering whether she should wait for
>>Ropinirole (how long will it take?) or try one of the other drugs
>>often mentioned here (parlodel, permax, bromocriptine, amantadine,
>>apomorphine?).  We are trying to delay the start of Sinemet for as long
>>as possible.
>>
>>Any comments or suggestions would be appreciated
>>
>>Jane, daughter ([log in to unmask]) for
>>Jessie ([log in to unmask])
>>
>>Thanks!
>>
>>
>
>------------------------------
>
>Date:    Wed, 3 Apr 1996 23:25:01 -0500
>From:    Camilla Flintermann <[log in to unmask]>
>Subject: Re: new member
>
>Rosemary--welcome, and you are not alone--I'm sure you will hear from other
>"YOPD" (Young Onset PDs) who can give you helpful support. Th Amer. PD Assn. (A
>PDA) has a network of YOPD groups and services-- Contact APDA at
>1-800-223-APDA-- to find the one closest to you. Hang in there!
>Camilla Flintermann, CG for Peter,76/6+ Oxford,OH
>[log in to unmask]
>
>------------------------------
>
>Date:    Wed, 3 Apr 1996 23:48:06 -0500
>From:    "J.R. Bruman" <[log in to unmask]>
>Subject: Is it really PD?
>
>Dear listmembers, I got so many requests that I must cut it off at
>this point- but for those who may still be interested it seems
>worthwhile to post this much shortened version. I'll still answer
>specific questions about references, etc. by e-mail if I can:
>
>In an organ as complex as the brain, one can't expect each of its
>many illnesses to be precisely defined and distinct from all the
>others. Moreover, conditions having similar or related symptoms
>may often be combined. Partly for those reasons, the job of
>diagnosis is best left to the highly trained neurologist:
>
>Primarily Motion Disorders:
>
>Abbr.   Terminology          Relative           Suspicious
>                             Frequency*         Features
>
>PD    Parkinson's Disease         78%    tremor, rigidity, slowness;
>                                         responds to dopaminergic drugs
>
>ET    Essential Tremor            ??     tremor alone; responds to
>                                         Inderal, Mysoline, alcohol
>
>--    Parkinsonism Plus           12%    various forms of Multiple
>                                         System Atrophy (MSA) below:
>
>PSP   Progressive Supranuclear   7.5%    eye and eyelid control
>      Palsy                              problems
>
>SDS   Shy-Drager Syndrome        1.7%    orthostatic hypotension
>
>OPCA  OlivoPontoCerebellar       < 1%    parkinsonism plus ataxia
>      Atrophy
>
>SND   StriatoNigral Degeneration < 1%    early-onset falling, dysarthria;
>                                         may respond to levodopa at first
>
>CBGD  CorticoBasal-Ganglionic    < 1%    parkinsonism plus apraxia
>      Degeneration                       plus marked asymmetry
>
>--    Secondary Parkinsonism       8%    toxin, trauma, stroke, tumor etc.
>
>*These frequencies occurred in a sample of some 2000 patients a few years
>ago. ET often occurs together with PD; when occurring alone it is often
>misdiagnosed as PD, or may go untreated, so its frequency is unknown.
>
>Other diseases which at onset may suggest PD or occur with PD:
>
>MS   Multiple Sclerosis
>ALS  Amyotrophic Lateral Sclerosis (Lou Gehrig Disease)
>AD   Alzheimer's Disease
>CJD  Creutzfeldt-Jakob Disease
>
>Not a cheerful message, but I hope useful.
>
>
>J. R. Bruman (818) 789-3694
>3527 Cody Road
>Sherman Oaks CA 91403
>
>------------------------------
>
>End of PARKINSN Digest - 2 Apr 1996 to 3 Apr 1996
>*************************************************