Parkinson's Disease Tulip


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Old 09-28-2007, 10:54 PM #1
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Default do you believe in stages?

Hoehn and Yahr Staging of Parkinson's Disease
Stage One
Signs and symptoms on one side only
Symptoms mild
Symptoms inconvenient but not disabling
Usually presents with tremor of one limb
Friends have noticed changes in posture, locomotion and facial expression

Stage Two
Symptoms are bilateral
Minimal disability
Posture and gait affected

Stage Three
Significant slowing of body movements
Early impairment of equilibrium on walking or standing
Generalized dysfunction that is moderately severe

Stage Four
Severe symptoms
Can still walk to a limited extent
Rigidity and bradykinesia
No longer able to live alone
Tremor may be less than earlier stages

Stage Five
Cachectic stage
Invalidism complete
Cannot stand or walk
Requires constant nursing care

or--

Parkinson's disease stages include:

Stage 1: During this initial phase of the disease, a patient usually experiences mild symptoms. These symptoms may inconvenience the day-to-day tasks the patient would otherwise complete with ease. Typically these symptoms will include the presence of tremors or experiencing shaking in one of the limbs.

Also during Stage 1, friends and family can usually detect changes in the Parkinson's patient including poor posture, loss of balance, and abnormal facial expressions.

Stage 2: In the second stage of Parkinson's disease, the patients symptoms are bilateral, affecting both limbs and both sides of the body. The patient usually encounters problems walking or maintaining balance, and the inability to complete normal physical tasks becomes more apparent.

Stage 3: Stage 3 symptoms of Parkinson's disease can be rather severe and include the inability to walk straight or to stand. There is a noticeable slowing of physical movements in Stage 3.

Stage 4: This stage of the disease is accompanied by severe symptoms of Parkinsons. Walking may still occur, but it is often limited and rigidity and bradykinesia are often visible. During this stage, most patients are unable to complete day-to-day tasks, and usually cannot live on their own. The tremors or shakiness that take over during the earlier stages however, may lessen or become non-existent for unknown reasons during this time.

Stage 5: The last or final stage of Parkinsons disease usually takes over the patients physical movements. The patient is usually unable to take care of himself or herself and may not be able to stand or walk during this stage. A patient at Stage 5 usually requires constant one-on-one nursing care


i do and i dont. i am actually too tired right now to write what i think, but i did want to post this while i am thinking about it.
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Old 09-28-2007, 11:23 PM #2
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Heart dear harley

There was a good man who died last summer his name was James Vidamour
you knew him as "Jimwrite" -well Jim introduced me to
Dr. Margaret Hoehn, she was a lovely lady and smart as a whip,
she enjoyed talikng to Jim and he wanted her to talkwith me, because at that time I was young?
She passed away in July of - 2005

I have no automatic belief schedule for death

-however the hospice Nurse, that helped take care of my mom in 1988
told me my mom had about 30 days left to live, because my mother had breast cancer, and I was really shocked when the nurse said -30 days?
I did not believe her -
however - in fact my mom died a month later,
she said -(the lovely hospice nurse) said :
there are stages people go through in the process of dying
however she said -some people are able to let go much easier.
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Resolve to be tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant with the weak and the wrong. Sometime in your life you will have been all of these.
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Old 09-29-2007, 01:57 AM #3
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Default Good question Harley ...

and one I have beenn thinking about myself.

H & Y was criticised by the Movement Disorder Society as follows:

"The Movement Disorder Society Task Force for Rating Scales for Parkinson's disease (PD) prepared a critique of the Hoehn and Yahr scale (HY). Strengths of the HY scale include its wide utilization and acceptance. Progressively higher stages correlate with neuroimaging studies of dopaminergic loss, and high correlations exist between the HY scale and some standardized scales of motor impairment, disability, and quality of life. Weaknesses include the scale's mixing of impairment and disability and its non-linearity. Because the HY scale is weighted heavily toward postural instability as the primary index of disease severity, it does not capture completely impairments or disability from other motor features of PD and gives no information on nonmotor problems".

http://www3.interscience.wiley.com/c...83284/ABSTRACT

UDPRS as described by the National parkinson Foundation seems much more comprehensive:

http://www.parkinson.org/NETCOMMUNIT...=367&srcid=202

Unified Parkinson Disease Rating Scale (UPDRS)

The UPDRS is a rating tool to follow the longitudinal course of Parkinson's Disease. It is made up of the 1) Mentation, Behavior, and Mood, 2) ADL and 3) Motor sections. These are evaluated by interview. Some sections require multiple grades assigned to each extremity. A total of 199 points are possible. 199 represents the worst (total) disability), 0--no disability.

I. Mentation, Behavior, Mood

Intellectual Impairment
0-none
1-mild (consistent forgetfulness with partial recollection of events with no other difficulties)
2-moderate memory loss with disorientation and moderate difficulty handling complex problems
3-severe memory loss with disorientation to time and often place, severe impairment with problems
4-severe memory loss with orientation only to person, unable to make judgments or solve problems

Thought Disorder
0-none
1-vivid dreaming
2-"benign" hallucination with insight retained
3-occasional to frequent hallucination or delusions without insight, could interfere with daily activities
4-persistent hallucination, delusions, or florid psychosis.

Depression
0-not present
1-periods of sadness or guilt greater than normal, never sustained for more than a few days or a week
2-sustained depression for >1 week
3-vegetative symptoms (insomnia, anorexia, abulia, weight loss)
4-vegetative symptoms with suicidality

Motivation/Initiative
0-normal
1-less of assertive, more passive
2-loss of initiative or disinterest in elective activities
3-loss of initiative or disinterest in day to say (routine) activities
4-withdrawn, complete loss of motivation


II. Activities of Daily Living

Speech
0-normal
1-mildly affected, no difficulty being understood
2-moderately affected, may be asked to repeat
3-severely affected, frequently asked to repeat
4-unintelligible most of time

Salivation
0-normal
1-slight but noticeable increase, may have nighttime drooling
2-moderately excessive saliva, hay minimal drooling
3-marked drooling

Swallowing
0-normal
1-rare choking
2-occasional choking
3-requires soft food
4-requires NG tube or G-tube

Handwriting
0-normal
1-slightly small or slow
2-all words small but legible
3-severely affected, not all words legible
4-majority illegible

Cutting Food/Handing Utensils
0-normal
1-somewhat slow and clumsy but no help needed
2-can cut most foods, some help needed
3-food must be cut, but can feed self
4-needs to be fed

Dressing
0-normal
1-somewhat slow, no help needed
2-occasional help with buttons or arms in sleeves
3-considerable help required but can do something alone
4-helpless

Hygiene
0-normal
1-somewhat slow but no help needed
2-needs help with shower or bath or very slow in hygienic care
3-requires assistance for washing, brushing teeth, going to bathroom
4-helpless

Turning in Bed/ Adjusting Bed Clothes
0-normal
1-somewhat slow no help needed
2-can turn alone or adjust sheets but with great difficulty
3-san initiate but not turn or adjust alone
4-helpless

Falling-Unrelated to Freezing
0-none
1-rare falls
2-occasional, less than one per day
3-average of once per day
4->1 per day

Freezing When Walking
0-normal
1-rare, may have start hesitation
2-occasional falls from freezing
3-frequent freezing, occasional falls
4-frequent falls from freezing

Walking
0-normal
1-mild difficulty, day drag legs or decrease arm swing
2-moderate difficultly requires no assist
3-severe disturbance requires assistance
4-cannot walk at all even with assist

Tremor
0-absent
1-slight and infrequent, not bothersome to patient
2-moderate, bothersome to patient
3-severe, interfere with many activities
4-marked, interferes with many activities

Sensory Complaints Related to Parkinsonism
0-none
1-occasionally has numbness, tingling, and mild aching
2-frequent, but not distressing
3-frequent painful sensation
4-excruciating pain

III. Motor Exam

Speech
0-normal
1-slight loss of expression, diction,volume
2-monotone, slurred but understandable, mod. impaired
3-marked impairment, difficult to understand
4-unintelligible

Facial Expression
0-Normal
1-slight hypomymia, could be poker face
2-slight but definite abnormal diminution in expression
3-mod. hypomimia, lips parted some of time
4-masked or fixed face, lips parted 1/4 of inch or more with complete loss of expression

*Tremor at Rest
Face
0-absent
1-slight and infrequent
2-mild and present most of time
3-moderate and present most of time
4-marked and present most of time

Right Upper Extremity (RUE)
0-absent
1-slight and infrequent
2-mild and present most of time
3-moderate and present most of time
4-marked and present most of time

LUE
0-absent
1-slight and infrequent
2-mild and present most of time
3-moderate and present most of time
4-marked and present most of time

RLE
0-absent
1-slight and infrequent
2-mild and present most of time
3-moderate and present most of time
4-marked and present most of time

LLE
0-absent
1-slight and infrequent
2-mild and present most of time
3-moderate and present most of time
4-marked and present most of time

*Action or Postural Tremor

RUE
0-absent
1-slight, present with action
2-moderate, present with action
3-moderate present with action and posture holding
4-marked, interferes with feeding

LUE
0-absent
1-slight, present with action
2-moderate, present with action
3-moderate present with action and posture holding
4-marked, interferes with feeding

*Rigidity

Neck
0-absent
1-slight or only with activation
2-mild/moderate
3-marked, full range of motion
4-severe

RUE
0-absent
1-slight or only with activation
2-mild/moderate
3-marked, full range of motion
4-severe

LUE
0-absent
1-slight or only with activation
2-mild/moderate
3-marked, full range of motion
4-severe

RLE
0-absent
1-slight or only with activation
2-mild/moderate
3-marked, full range of motion
4-severe

LLE
0-absent
1-slight or only with activation
2-mild/moderate
3-marked, full range of motion
4-severe

*Finger taps

Right
0-normal
1-mild slowing, and/or reduction in amp.
2-moderate impaired. Definite and early fatiguing, may have occasional arrests
3-severely impaired. Frequent hesitations and arrests.
4-can barely perform

Left
0-normal
1-mild slowing, and/or reduction in amp.
2-moderate impaired. Definite and early fatiguing, may have occasional arrests
3-severely impaired. Frequent hesitations and arrests.
4-can barely perform

*Hand Movements (open and close hands in rapid succession)

Right
0-normal
1-mild slowing, and/or reduction in amp.
2-moderate impaired. Definite and early fatiguing, may have occasional arrests
3-severely impaired. Frequent hesitations and arrests.
4-can barely perform

Left
0-normal
1-mild slowing, and/or reduction in amp.
2-moderate impaired. Definite and early fatiguing, may have occasional arrests
3-severely impaired. Frequent hesitations and arrests.
4-can barely perform

*Rapid Alternating Movements (pronate and supinate hands)

Right
0-normal
1-mild slowing, and/or reduction in amp.
2-moderate impaired. Definite and early fatiguing, may have occasional arrests
3-severely impaired. Frequent hesitations and arrests.
4-can barely perform

Left
0-normal
1-mild slowing, and/or reduction in amp.
2-moderate impaired. Definite and early fatiguing, may have occasional arrests
3-severely impaired. Frequent hesitations and arrests.
4-can barely perform

*Leg Agility (tap heel on ground, amp should be 3 inches)

Right
0-normal
1-mild slowing, and/or reduction in amp.
2-moderate impaired. Definite and early fatiguing, may have occasional arrests
3-severely impaired. Frequent hesitations and arrests.
4-can barely perform

Left
0-normal
1-mild slowing, and/or reduction in amp.
2-moderate impaired. Definite and early fatiguing, may have occasional arrests
3-severely impaired. Frequent hesitations and arrests.
4-can barely perform

*Arising From Chair (pt. arises with arms folded across chest)
0-normal
1-slow, may need more than one attempt
2-pushes self up from arms or seat
3-tends to fall back, may need multiple tries but can arise without assistance
4-unable to arise without help

*Posture
0-normal erect
1-slightly stooped, could be normal for older person
2-definitely abnormal, mod. stooped, may lean to one side
3-severely stooped with kyphosis
4-marked flexion with extreme abnormality of posture

*Gait
0-normal
1-walks slowly, may shuffle with short steps, no festination or propulsion
2-walks with difficulty, little or no assistance, some festination, short steps or propulsion
3-severe disturbance, frequent assistance
4-cannot walk

*Postural Stability (retropulsion test)
0-normal
1-recovers unaided
2-would fall if not caught
3-falls spontaneously
4-unable to stand

*Body Bradykinesia/ Hypokinesia
0-none
1-minimal slowness, could be normal, deliberate character
2-mild slowness and poverty of movement, definitely abnormal, or dec. amp. of movement
3-moderate slowness, poverty, or small amplitude
4-marked slowness, poverty, or amplitude


I believe this thread cuts across Indigogo's "Benign Tremulous Parkinsonism", and her quote:

"labels are not as important as treating the symptoms of each individual person who walks through the door. There's a more nuanced approach to treating PD than just throwing more sinemet at it.

The lesson for me is more psychological - start living my life without the fear of losing my life to things that haven't even happened yet, and might not ever happen. It's hard for me to do"

This sentiment carries more value to me than any PD progression scale.

Take care,
Neil.
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Old 09-29-2007, 03:03 AM #4
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Default I have given up

I have given up looking at these scales as they are so depressing.I just believe in living each day to the full.As it says in Parkinson's for Dummies"prepare for the future but do not project"or as we say in the U.Ko not cross your bridges until you get to them
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Old 09-29-2007, 05:30 AM #5
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Default Or.....

I can't resist, I like to say:
Do not burn your bridges until you get to them...... it's all water under the river...and a stitch in the hand saves nine on the roof.**

We don't fit into the stage patterns, but for the doctors who treat us, who don't themselves know from inside how it feels to have PD, it is necessary to make charts and slots into which they can squeeze us to categorize us. It always strikes me when I see my nice neurologist, that he may know all about PD and other movement disorders, but he will never know PD as I do. He can categorize me, but I determine what to think about my 'stage' and my quality of life....so far at least.

** Not making fun of using 'sayings', just agreeing whole heartedly, and light heartedly that the now must be enjoyed now.
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Old 09-29-2007, 05:59 AM #6
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Default

still not quite awake yet. but, heres another question. how can a disease be catagorized in any stages when no two people are alike? even more to ponder... why are we all put under one umbrella when no two people are alike?
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Last edited by harley; 09-29-2007 at 06:28 AM.
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Old 09-29-2007, 06:59 AM #7
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Heart dear harley

we know things by signs ...
like in the hospital they remove fingernail polish -so they can quickly
see you are not getting enough oxygen
they look at the eyes to see, if you pupils are dialated
etc.
just signs to watch out for -
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.
, on Flickr
pd documentary - part 2 and 3

.


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Resolve to be tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant with the weak and the wrong. Sometime in your life you will have been all of these.
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Old 09-29-2007, 07:44 AM #8
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Default Great thread.......

And one we need from time to time to keep a reality check on ourselves.
I'm for all descriptions of PD. The symptoms and timescales generally describe all of us at one time or another.
Birte, i must say that your wisdom shines through. As an example in my individual case, i satrated choking within 4 years of the disaese, one night almost bit the big one. After that i said to myself "well there will be no more of this!" I tried very hard not to burn that bridge and consider myself on the other side of it. I concentrated on everything i've eaten since that night, and haven't choked on any food in years. I also got some great training about foood consistency awareness while in hospital for something (maybe)unrelated to PD. The only other significant symptom that i've managed to control is walking. With really trying, i can't walk too far, but i have almost stopped falling down, even without my cane. Other things, i just haven't had much luck with, although i keep trying.
AS an offside, I'm very bad at handling stress, moreso than anything, if i try to go off my antidepressants or Klonopin or pain meds to "keep from becoming too addicted" (never do this with sinemet!!!), I get nasty and over the years have alienated almost everybody in my family, who can't see it's the PD and not the underlying person, who they used to be tolerant with back in the old days when I could handle stress much better.
So what am I trying to say? Yes it is possible , in spite of "expected progression" to be a 0 in one aspect, a 2,3 or 4 in others, and even a 5 in other aspects still. Looking at all the categories, it's no wonder we're all so different when one considers the number of permutations that can exist.
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Old 09-29-2007, 12:11 PM #9
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Default

In my opinion, these scales are a bit deceving. With all of the ups and downs we got through with PD, we could be almost anywhere on the scale at any given time. I for example am a "1" on some things, a "0" on another, and "2" on others most of the time. About a week ago before my doctor increased my Sinemet, I was up on the tremor scale and upon the rigidity scale.

Now there are times that I feel like I just want to give up and jump in the river, call it quits, and tell everyone to bugger off! Then a week later, I'm up and running, and that grand mood swing has gone away. If I had gone to the doctor then, she would have given me a 4 for depression!

So these rating scales, when they are used, are nothing more than a snap-shot taken at that time frame. In order for them to be truely accurate, they would need to be updated on a daily basis for the course of a month or so to get the full picture of what's happening.


John
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Old 09-30-2007, 02:58 PM #10
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Default at best ... narrow slice of your life

I understand medical professionals needing a system that identifies stages of deterioration or lists of certain deficits to assess levels of assistance, care, planning, physio, medication. But I have concerns about being labeled or pegged in 1 stage without considering many factors that influence a body’s behaviour or potential for improvement. I haven’t run from bad to worse in a purely chronological way. Some might say I’m just in denial. If I get a low grade temperature my meds may not metabolize for several days and I feel like one more clean shirt will do me. If you tested me cognitively when I first began Requip the report would indicate that the lobotomy was working. I’ve been nauseated and had it pass, fogged out and the fog has lifted and last month I barely left the house and was a shaky mess, but my drugs have clicked in again and I’m driving from Charlottetown to New Glasgow for my Grandmother’s 94th birthday Oct 5th. I know my health improves when I eat better, exercise and pour my pills the night before. Until a scale deals with finance, relationships, job stress, new meds, wearing off of old meds and a whole host of other variables, at best, staging might define a narrow slice of your life at a given moment. Besides, where’s that stage that says I’m fabulous, because I’m in the sunny south, munching on fava beans and drinking margaritas. Oh my…
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