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