if anyone is interested in responding, i am very much interested to hear from people who are on any form of levodopa. in particular, i am interested in answers to the following questions:

1) what was the first drug prescribed for your pd symptoms?
2) at the time you started any form of levodopa, do you have any idea what either your UPDRS score and/or your Hoehn & Yahr stage was?
3) regardless of your score(s), how would you rate your symptoms on a scale of 1 to 10 at the time you started levodopa, where 1 is no symptoms and 10 is being incapacitated? were you unable to work without it, for example, if you were still working at all? if you were retired, were there other crucial things besides work that you couldn't do?

thanks in advance to anyone who responds!
Boann

Hello...not that I can be of much help as it is so long since I was diagnosed and can`t even remember the name of my first drug.I was diagnosed at the age of 38 [now 47] and managed as long as I could without any meds.Maybe a year or so.My first drugs were definately not of the levadopa type. As with most pd patients my drugs were then chopped and changed until they balanced me.Because of my age I needed a drug which would be safe for pregnancy but I miscarried anyway.Then another drug which suited me,but which could cause a fatal lung disease was changed for some meds which landed me in bed and wanting to rip my head off.
I had to retire at 40 but have been on sinemet and ropinarole for a few years now and I am steadily on the decline.
Have not had any scores read to me.Don`t really want to know .Just carrying on the best I can.
If I wake up on a day not being able to do something I could the day before I search for a way round it.
Sure...there are lots of things I can no longer do like play the piano [was a prof pianist] or write well.[loved calliigraphy and used to draw and paint] but I am ace with the electric hedge clippers and tear around my garden on a tractor. lol
Will try to get to know from my neuro what my first drugs were. Interesting question.
Steff

I like these type of polls. You get to know how you compare to others.

I was diagnosed 21 years ago at age 39. I grew up in Nebraska and had been in Alaska about 4 years when diagnosed. The first drug I took was levodopa and has been my primary drug for entire time. There was no internet in those days and I had to accept what only two or three nuerologists in the state said and pd was not their spsecialty by any means.
No idea!
At time of original diagnosis I suffered only slight tremor so would say might be scale of 2. By 2005, 20 years, I have suffered nearly every symptom but none probably more than a scale of 7 or 8 (I've been real lucky). Had DBS-STN in May and August of 2005 and would say no symptoms are greater than 4, except writing, at this time. I am still working full time. Plan on retiring at age 62 in a couple of years. At my high point I was taking 6 or 7 25/250 levodopa and am now taking one 25/100 regular and one 25/100 CR three times a day. I have taken nearly all of the supplemental meds at one time or the other and the only additional drug I am now taking is Comtan.

hello, i don't know if i can be of some help to you but here goes: i was dxed in 1991 but started taking sinemet in 1990. i had been nursing my second child & had to cut that short when i started to take this drug. back then, it was the drug they started you out on. i have been on sinemet for over 16 years now and while i can tell that i have built up a tolererance to it (i now take between 14 & 15 carbo/levodopa 25/100's)a day and a ton of other drugs. but i'm still relatively active tho in a wheelchair. i had 2 pallidotomies in 1996 (the 1st was successful beyond my wildest dreams-the 2nd nearly killed me) so i'm not your typical (is there such a thing???) parkie. i am grateful for all the time that sinemet has bought for me.

Helloooo Dear Boann,

most of the scoring was Hoehn and Yahr when I was dxd'd
info here:
http://www.parkinson.org/site/pp.asp...JLPwB&b=123510

Hoehn and Yahr Staging of Parkinson's Disease

I have had the honor of speaking to Dr. Hoehn, she was lovely and very brilliant.

1. Stage One
1. Signs and symptoms on one side only
2. Symptoms mild
3. Symptoms inconvenient but not disabling
4. Usually presents with tremor of one limb
5. Friends have noticed changes in posture, locomotion and facial expression

2. Stage Two
1. Symptoms are bilateral
2. Minimal disability
3. Posture and gait affected

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

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

5. Stage Five
1. Cachectic stage
2. Invalidism complete
3. Cannot stand or walk
4. Requires constant nursing care

When I was finally dxd in 1993 - it was very rare and very hard in the USA
for a neurologist to give a young person a diagnosis of an older/senior citizens illness?
however, I have PD in my family, my great Aunt had PD,
I was told I had a neurological tremor when I was 29...
finally when my dr. told me - I did indeed have Parkinson's I was 32
was given many test and an MRI
I was dxd with a bilateral tremor and had been effected on both sides.
He made me take off my shoes, and showed me had bad of shape the heel of my left shoe was - I had been dragging my left leg...

The first drug was levadopa but I had extreme nausea and vomitting,
so he put me on requip. It made me sleepy, but I took it for a couple of years, and it really did not help me at all in retrospect,
when I finally used levadopa - I had to take extra carbi dopa which was not available in the US, so I bought it through Canada, the drug was called -Domperidone.

Today I still walk -can actually run sometimes, have bad days too?
Can speak, laugh, cough, choke while laughing,
but I have hope, and I have no doubt this will be cured sooner than later!

note* I take less sinemet than I used to, and I do not take half the drugs I once did, I do believe I was overmedicated badly.

all I take is[4 ]- Sinemet CR a day - anxiety med, and a small dose of an
antidepressant daily and motrin.
I do admit I have high stress which is very bad
in dealing with lifes curveballs
but I am learning to think a differently and I am making new neuropathways...learning a new language anything fun in which you use your mind, and laughing is the best medicine.

I have had no Brian surgeries - for which I am very thankful, I am not mad at my body like
I once was, I have gained insight in pain and how to find peace.
I am a blessed patient, I have many friends and family, and I have faith in a good Creator of the Universe.
I also take supplements! and drink fiji water, not tap water

and I do well - I can shop by myself, walk by my self, go places and have as
much life as possible...but I do not drive anymore, mainly because I cant afford the gas or a car, car insurance either!
but I pretend my chauffer is coming to pick me up???

I do not use the rate a patient scale,
when I die - I am donating my brain to the University of Kentucky, and my friends there - they can rate it for me...

hope this helps you dear Boann!

This rating system has been largely supplanted by the Unified Parkinson's Disease Rating Scale, which is much more complicated.

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


--------------------------------------------------------------------------------

Schwab and England Activities of Daily Living

Gillingham FJ, Donaldson MC, eds., Third Symp. of Parkinson's Disease, Edinburgh, Scotland, E&S Livingstone, 1969, pp.152-7.

Rating can be assigned by rater or by patient.

* 100%-Completely independent. Able to do all chores w/o slowness, difficulty, or impairment.

* 90%-Completely independent. Able to do all chores with some slowness, difficulty, or impairment. May take twice as long.

* 80%-Independent in most chores. Takes twice as long. Conscious of difficulty and slowing

* 70%-Not completely independent. More difficulty with chores. 3 to 4X along on chores for some. May take large part of day for chores.

* 60%-Some dependency. Can do most chores, but very slowly and with much effort. Errors, some impossible

* 50%-More dependant. Help with 1/2 of chores. Difficulty with everything

* 40%-Very dependant. Can assist with all chores but few alone

* 30%-With effort, now and then does a few chores alone of begins alone. Much help needed

* 20%-Nothing alone. Can do some slight help with some chores. Severe invalid

* 10%-Totally dependant, helpless

* 0%-Vegetative functions such as swallowing, bladder and bowel function are not functioning. Bedridden.
Disclaimer: The information and reference materials contained herein is intended solely for the information of the reader. It should not be used for treatment purposes, but rather for discussion with the patient's own physician.

Hello,
My dad has parkinson's dx in 97

from the score info, he is mostly at a 1-2 in most sections still

thanks to everyone who has responded so far - i have more questions for all of you but am not likely to be able to get them out there before Weds night, so please check back, if you are still interested.

thanks again to all for responding. seems only fitting that i should tell my own story and in so doing answer my own questions.

i first noticed something in 1996, when I was 32. suddenly, it seemed my hand was not fully obeying my brain's commands when i was writing in my journal, but it was so subtle that i figured i was imagining it. i maintained that attitude for the next two years, in spite of the tremor that appeared in my right hand six months later, and the disappearance of arm swing on the right when walking within one year, and the development an odd, completely unconscious habit of standing with all my weight on my left foot. however, by the two year mark, writing with pen and paper just wasn't worth the effort anymore and i knew i had to find out what was wrong.

i was eventually diagnosed in 2000, when i was 36. i started taking Mirapex in 2001, i think. aside from CoQ10, it is still the only thing i take for PD. the only reason i started taking it was because i unexpectedly found myself looking for a job (start-up went belly up) and was concerned about my ability to type - otherwise would not have started as my other symptoms were still negligible.

i don't know my UPDRS score but in May i was told i am all 1's and 0's. I walk funny, but that is at least partially due to nerve damage. i still don't write much with pen and paper, and typing can be a major challenge (after 5 years i guess a DA might start to wear thin) - there are other things i don't do so well anymore, like dancing, but overall, i am about 95% fine. no dyskinesias, no fluctuations, no carefully choreographed and precisely timed cocktail of drugs.

i have the impression i am something of an anomaly, being in this good shape and taking only one drug 10 years into symptoms and 6 years past diagnosis, and the one thing that i definitely don't have in common with most others with PD is levodopa.

so my questions were intended to try and get a sense of what proportion of people were started off on ldopa and how severe their symptoms were at that time, by both their own estimation and the "objective" assessment of a neuro using either H&Y or the UPDRS.

basically, my thought is that maybe i am not such an anomaly - in the early studies i have read, the folks this drug was tested on were in the advanced stages of the disease - and many of the studies that i have read, particularly the early ones, recommend delaying the need for levodopa until, say, one's bodily safety is endangered (by falls, for example) or until one's ability to work or accomplish basic activities like grocery shopping is seriously impacted, and i would love to know what the norm is these days - because if one is already advanced, then maybe the degree of benefit one gets from levodopa (the bang) is worth the subsequent side effects (the buck), because one was already pretty bad off. but if one is only mildly symptomatic, one gets far less bang for the same buck (or more buck(s), if one is on the younger side), since bang, or "degree of improvement," is relative to one's level of disability. Hope my meaning didn’t get lost in the metaphor there.

The problem is that there are very few controls, i.e., people w/PD who have never taken levodopa, with whom to compare experiences. That is a major problem in PD research in general, in my opinion, but that is a whole ‘nother thread.

boann

Interesting question. I was diagnosed in April of this year at the age of 46. Rigidity, lack of arm swing on my right side, micrographia, loss of motor skills in my right hand (I'm right handed), some dystonia between my shoulder blades and into the base of my neck, bradykinesia, and slight tremor in my right hand. I consider myself very early on in the disease and my UPDRS rating was a 17, indicating "mild" PD, although to me it feels more than mild a lot of the time!

I was originally offered Mirapex to start on but declined due to all the horror stories I was hearing about OCD behaviors. I naturally have OCD, so it scared me. I elected to start on Sinemet, 25/100 3X a day and I feel better than I have in 6 or more years. I guess some people call this the honeymoon period.

Recently, the MDS who did the UPDRS on me suggested that I try Requip in combination with the Sinemet so I could cut back on the Sinemet, but I haven't made that decision yet. Still a bit scared of the OCD aggravation potential. I'm well aware I may need the agonist at some point in my treatment but I don't know if I'm ready for it right now.

I've heard lots of arguments justifying starting with Sinemet, not starting with Sinemet, dopamine agonists, holding off on any meds until you feel you really need it, etc. The problem is, most of the arguments have two basic faults to them. One, they seem to be based on purely anecdotal evidence, not scientific. And two, everyone truly is different in terms of how the disease affects them. Our biological makeup is so different from one another. What works for one person doesn't mean it will work for me or you. PD truly is a designer disease.

So in a sense, you have to hear the stories and make the choice that fits you best. And that's truly a tough thing to do. The way I see it, I could second guess myself to death. But life is short, so I'll just make a decision that I feel is right for me and move forward the best I can.

I guess I've chosen quality over quantity and I'm okay with that.

Todd
PDTalks.com

First drug was Mirapex (didn't work) then Requip (didn't work) then 12 months after diagnosis - 800mg Sinemet (did work)

No score was determined (regular neurologist with limited PD expertise)

1 to 10? Probably a 3. Worked without it but, was difficult.

HTH

MikeTTF