>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
>*************************************************