Stages of parkinson's


#1
I did not want to post this in the posssibly more appropriate thread "will my Parkinson's progress" as it is a general rather than a personal query.
I read, when first dx that there are stages of pd defined by the medical profession based on clincal obsvation & tests. I will admit that I attempted to discover whether I was stage 1,2, etc & was met with a blank stare from the neurologist.
I am wondering if this is an accepted scale, if it is an attempt to be an indicator of which medications are most appropriate or if it is simply an after the event description of where we're at?
Or maybe I should just forget about it?

#2
Judging by most Neuros I've met, I wouldn't think they'd have a clue what you're talking about.

:rolling_eyes:

#3
I understand what you mean AB, somebody once told me that they were at stage 5 pd. I like you anted to find out more, but cannot for the life of me find it and my neuro probably gave me the same look yours did. So come on.......does anybody know the answer to this?

Glenchass

#4
I'll admit to wondering what stage I'd be classed as being at, then I thought, do I really want to know? how would I feel if they told me I was at stage 3 or 4?
I don't know if it's an accepted scale or if it hellps them decide what meds are best for what stage, maybe it's just a rough guidline for whatever reason.

#5
http://www.pdcaregiver.org/Unified.html

The Unified Parkinson Rating Scale
Many of you have asked about the Unified Parkinson Diseae Rating Scale the most widely used for evaluating treatment in parkinson disease.

UNIFIED PARKINSON'S DISEASE RATING SCALE

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.

#6
Thank you Krugen. How do you find out your score, assuming you have one & wish to do so? ( and like you Gill I am not at all sure that I do)

#7
Hi,
I have come to the conclusion that there is no Black and White,no magic formula,no single perfect medication for all and no single explanation for any issue or problem voiced on this forum.There is a general table of stages,but this is only a guide.A neurologist can only estimate,each one of us is different and it is sometimes not easy to pinpoint,perhaps overlapping or showing signs relevant to more than one stage.There is a large grey area,sometimes exact answers cannot be given because of this.
My Father in Law passed away 3 years ago(Alzheimers),we did not now he was so bad until a Brain scan revealed the true picture a few weeks before he passed away.My Mother is currently in a care home with the same.About a year ago she was given a couple of days to live at the most.She now is sitting in the living area,can feed herself and is chatty and content.What stage is She in,well she was in the final stages a year ago.Now she is where,what stage,in a hazy grey area.All i know is my Father at 86 years of age visits her daily and stages mean nothing in comparison to reality.
I was urinating pure blood a couple of years ago,lost weight rapidly was ill to the point of saying my last goodbyes,the pain and other symptoms indicative of cancer.I am still here,no clear answers,then i was diagnosed Parkinsons,an even vaguer area,in the middle of a grey medication area now,waiting for adjustments.To cap it all have never fully recovered from a Gall stone operation,another grey area.Is it due to Parkinsons,this pain i,m still in,or have i had an unlucky botch job.Some people bounce up the same day and go back to work the following.I had a massive Haematoma and the bruising shocked everyone involved with my care(if you can call it that).I thought this is the end of me,as i lay in hospital for 4 days.I still have no answers,sitting here in pain whilst i type wondering what stage of recovery i can be classified as,no answers.
Stages are not clear cut and life is so complicated.Many external factors in our personal lives magnify this condition we have.My personal circumstances have had a profound effect on my Parkinsons recently.It is hard to and probably the wrong thing to do,placing yourself in a stage or category.I feel also that it is wrong to expect the Neurologists to do so also.
Annebernadette,i know you have been brave through your own personal grief and hardship.This can all have an effect on our condition.I personally would try not to categorise yourself.I think most Neurologists would try to do the same.To someone in a stage of progression,especially if getting it wrong,this can have a very negative effect.
I apologise for the ramble,but post my feelings all the same.one area overlaps another on this forum,thoughts flow,topics blend and there is never one definitive answer.
All the best
Titan

#8
To be honest I don't want to know my score :grin:

I think normally your Neuro would rate you, but I would guess that they only do this when you reach decision points such as considering DBS or major drug changes. There are other scales in use too.

If you really want to score yourself, you probably can BUT since you can only rate yourself subjectively (and haven't seen a large number of PD ers) you may get it wrong.

#9
http://parkinsons-disease.emedtv.com/parkinson's-disease/stages-of-parkinson's-disease.html

An Overview of Parkinson's Stages
There are several rating systems in place to stage Parkinson's disease. A widely used scale developed by Hoehn and Yahr categorizes people with the disease into one of five stages. These stages can help healthcare providers decide what treatment to recommend. They can also help families gain a better understanding of how Parkinson's disease progresses. The overall effect and severity of Parkinson's disease symptoms increases with each of these stages.

Healthcare providers may also describe Parkinson's disease stages as early, moderate, and advanced.

Stage I (Beginning Stage of Parkinson's)
Stage I is considered the beginning stage of the disease. A person is categorized with stage I if the following are present:

Signs and symptoms are only on one side of the body
Symptoms are mild
Symptoms are inconvenient but not disabling
Usually has tremors in one limb
Friends have noticed changes in posture, locomotion, and facial expression.

Stage I is also known as early-stage Parkinson's disease.

Parkinson's Disease Stage II
A person is categorized as stage II if the following are present:

Symptoms occur on both sides of the body
Minimal disability
Posture and gait are affected.

Medication may be started during stage I or II and typically involves one of the less powerful Parkinson's disease medications. This includes such drugs as:

Selegiline (Eldepryl®, Zelapar®, Emsam®)
An anticholinergic
A dopamine agonist, such as pramipexole (Mirapex®) or ropinirole (Requip®).

Using these medicines first allows the healthcare provider to save the most powerful treatment (specifically, levodopa) for the time when people need it most.

Parkinson's Disease Stage III (Moderate Parkinson's Disease)
Stages III, IV, and V are when a person develops significant disability from Parkinson's disease. A person in stage III is considered to have moderate Parkinson's disease.

A person is categorized with stage III if the following are present:

Significant slowing of body movements
Early impairment of equilibrium when walking or standing
Generalized dysfunction that is moderately severe.

Stage III is when levodopa is usually first prescribed (see Parkinson's Disease Medications).

Stage IV (Advanced Parkinson's Disease)
A person is categorized with stage IV of the disease if the following are present:

Severe symptoms
The person can still walk to a limited extent
Rigidity and bradykinesia are present
Person is no longer able to live alone
Tremor may be less than earlier stages.

This stage is considered advanced Parkinson's disease.

Stage V Parkinson's Disease
A person is said to be in stage V if the following are present:

Cachectic stage (general reduction in vitality and strength of body and mind)
Invalidism complete
Person cannot stand or walk
Requires constant nursing care.

#10
I think i'm still in the early stages of Parkinson's. My symptoms are mainly on my left side of my body although I have slight tremor in right hand and occasionally neuropathic pain. I'm guessing I am probably about 1.5. I'm quite disappointed that at this stage I'm on levadopa and had to come off the dopamine agonists due to impulsive behaviour. However, considering I have had symptoms since my mid to late 20's and I'm now 45, I think the Parkinson's is very slow in progression.

#11
my gp told me im at 4-5 stages ,i no how bad i am now ,but when u see it rote down it scares me,i shud not of even looked:disappointed:

#12
Ali - of course you looked. You are human. I feel dreadful for starting this thread if it has upset you or anyone else

#13
o no annabernatte please dont feel that way ,it ok dont wory honest ,it just me ok i get upset very easy im scared i see the neuro agin tomorrow and got results to come to find out wot else goin on with me body movements ,so please this thread is a good one ,please dont feel guilty in any way ,it just me ok xx:smile:

#14
All things are relative.

Lasr week or so, I fell on my coccyx ( I may have mentioned it ). Following this incident I had reached stage 5 of 5. The end was nigh.

I fessed all my misdemeanour's to my good lady and told my monster out law what I thought of her. I also sent that picture of my nipsy to my gp.

My coccyx appears to be OK, just a little delicate and I don't feel half bad. So I'm back to stage 1 again.

Also the misses and her maw aren't talking to me. So its not all bad.

I'm moving to another GP practice so, well overdue.

In conclusion when you are going for your assessment at the broo you are stage 5 otherwise you can forget it.

#15
A local PD nurse once told a group of us 'young parkies' that she would "support us as we progressed through stages 1-4 of the parkinsons journey". This jolly little offer through our apparently guaranteed "progression" (interesting interpretation of progress) didn't perhaps quite raise the warmth of feeling she was hoping for, oddly enough. Not sure why she bailed at stage 5 either!

#16
When I was first diagnosed 5 years ago , I went out and bought some books about Parkinsons Disease because for me I need to know what was in store for me. And learn more about what my journey will be through these 5 stages of PD.
Not a good read.... I am at stage 2,
However I keep on with exercise go for walks (at a slow pace now). And try to remain positive.
The best thing I did was to join the forum, learned more here than any books I have read on the subject.
PB x

#17
hi poshbird,

If i am not being too entrusive what is stage two


tulip

#18
Hi,
Don,t like to place myself in a stage.However ,if using Cutiepies stage definitions then i am probably in the depths of stage 1 still.Based on the fact that i am still only one side affected,but sometimes now am noticing the same stiffness in my unaffected hand when using the keyboard.No tremor in unaffected hand though so it could be overuse.This is the problem with pigeon holing yourself.
Anyway,how many people are put on levadopa treatment before the usual stage 3 expectancy.Are Neurologists to keen/hasty to introduce this too early,perhaps mainly because the DA concerns.Just a thought.Early introduction must have future impact.
like they say
All the Worlds a stage
Titan

#19
Hi Tulip

Going on cutiepies earlier post about the 5 'STAGES' I have now gone into stage 2. My tremor is most prominent on my left side. But recently I have noticed and so has my Consultant that my right hand has started with a tremor.
I can only assume we are put into 'stages' to calculate where we are with the disease.
All the best PB

#20
Using the Hoehn & Yahr scale,At about 8p.m. yesterday I would have put myself at Stage 1/2. At 5 a.m. today I would put myself at 4
I suppose Health care providers have to have something to work with when deciding upon medication , services such as physiotherapy, speech therapy. It is just a bit frustrating that I tend to be seen by them on a "stage 1 day". I can't get to their consulting rooms on a stage 4 day & they won't come to me.