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Topic The stages of PD Go to previous topic Go to next topic Go to higher level

By dkleinert On 2009.06.08 09:32
I hear people mention the stages of PD - can someone explain them to me? I recently saw "Stage 4" referring to my husband's PD on a Family Leave form our Neurologist completed for me for my job. THANKS!

By annwood On 2009.06.08 10:08
There is a unified scale that outlines what constitutes each stage. I believe it is Stage 1 thru Stage 5. If you Google "Stages of PD" it will give you the info. Good luck.

By Lynnie On 2010.01.30 11:26
My husband was diagnosed with PD, a couple of years ago and the Motion Disorder doctor said that he was in the early stages, but I don't know what number that would be.

There is another thing that the doctor asked when he wanted to know if he needed to increase his meds. He called it something, but I forget what it was but it worked this way:
On the scale of 100%, you can do everthing you want without any problem. and 80% meaning you can do everything but with a little difficulty and 70% can do things, but with more difficulty, and so on down the scale. How do you rate yourself?
At the time, my husband said 95% but I thought it was lower.
When we see the MDS I always go into the office too. If he says he isn't having problems with certain things, sometimes I have to say that he does.
PD is usually a slow process, but everyone it different, and with different symtoms. My husband has tremors and fatigue, but some people don't have the fatigue.
Anyway, this is just my 2 cents on the subject.
Lynnie

By LOHENGR1N On 2010.01.30 15:18
This is an updated version of the scale most widely referred to when stages are mentioned. However remember it's NOT set in stone! While Parkinson's is progressive with introduction of newer medicines or combos of med's one can seem to regress to an earlier stage for a time. On a personal note I don't care for these scales as some seem to resign themselves to the rating or the future. As I have said many times, I could be in a late stage 5 of getting hit by a bus for all I know! Or in other words We don't really know what our future is so live and love, enjoy the day you have as much as possible. Don't sweat the small stuff and watch out for lightening bolts! Take care, best of luck and hang in there.

The Hoehn and Yahr scale is a commonly used system for describing how the symptoms of Parkinson's disease progress. It was originally published in 1967 in the journal Neurology by Melvin Yahr and Margaret Hoehn. The original scale included stages 1 through 5. Since then, stage 0 has been added, and stages 1.5 and 2.5 have been proposed. This modified scale allocates stages from 0 to 5 to indicate the relative level of disability.

Stage 0: No signs of disease.
Stage 1: Unilateral symptoms only.
Stage 1.5: Unilateral and axial involvement.
Stage 2: Bilateral symptoms. No impairment of balance.
Stage 2.5: Mild bilateral disease with recovery on pull test.
Stage 3: Balance impairment. Mild to moderate disease. Physically independent.
Stage 4: Severe disability, but still able to walk or stand unassisted.
Stage 5: Needing a wheelchair or bedridden unless assisted.

By Emma On 2010.01.31 06:52
There is a lot of information about the stages of Parkinson's on the internet. In our case my husband's symptoms and progression have fit pretty neatly into these categories and he would now be considered to be in stage 4, but like Lohengrin said, they're not written in stone. There are other diseases, such as cancer, that have stages as well but I have known people with stage 2 cancer who have died and others with stage 4 who are alive after many years. Therefore I don't think the stage predicts longevity, but they can show you in some way where the person is in the progression of the disease. I have noticed, again as Lohengrin pointed out, that my husband sometimes seems to slip back, temporarily, to an earlier stage ... probably because of medication changes. Earlier in his disease I kind of liked reading about the stages because it helped me be prepared for what was probably coming next, consequently I didn't freak out as much when he developed new symptoms and I felt more prepared for them. Now I just think this disease is what it is and this "stage" may go on for a long time and it may not. I try to be prepared for what is to come, but not perseverate on it because we just don't know. Take care, I'm thinking of you.

By hubb On 2010.01.31 14:15
In the 25+ years we have dealing with PD, we have never been told by the neurologist that he was in a certain stage. I just wonder if the stages mentioned aren't more for us caretakers so that we can tell how they are faring compared with other PD patients. Going from these charts, my husband slips in between stages 3 and 4, with an occasional 5. I think we see the word "stages"and we think of cancer and its stages with 4 and 5 being terminal. But that's not true with the stages of PD - I think it's more for the neurologist to chart so they can remember the next time they see the patient. We knew my husband had difficulty with balance and mobility, and yesterday at our regular appointment (where we had not only neurologist, but student neurologist, movement disorder specialist and a PhD writing a paper on PD all in the small room at one time) I heard the neurologist tell the student who was at the computer "postural instability and something about his gait which I didn't understand"...he has never mentioned a stage. We are very fortunate in that so far, the synamets have helped him with no side effects and that's after about 10 years on them. So each person is affected so differently, yet we all share so many of the same symptoms. My husband complained about memory loss and he was told of a medicine (not aricept or exelon) that they had success with in PD. We declined (I just hate to add anything else since we are managing most of the time right now) and the nurologist then said "I looked at your chart and you complained about that in '99 and since then, all of your memory tests haven't shown that great a decline, so I concur with you about not adding it"....sometimes I feel like the more meds he takes, the more side effects he gets. Now he listens to the radio and believes all the vitamin commercials and heaven knows what else and wants to try them all because they all promise such wonderful results. I read an article in the paper recently where the author was talking about looking up ailments on Google, and said she had dry eyes, but by the time she got thru, she was convinced she had Lou Gerhig's disease....she called it cyber-condriac. Have to be careful listening to radio/TV commercials too!

By Lynnie On 2010.02.01 11:52
What do you mean by unilateral symptoms and axial involvement?
What is the body doing in this case?

By Reflection On 2010.02.01 12:27
Here's a link to three approaches to the stages of PD:

http://www.parkinson.org/Page.aspx?&pid=367&srcid=230

The Hoehn and Yahr is outmoded, because it takes into account only the physical movement symptoms, not the mood/behavior/cognition symptoms. A complication to figuring out where your loved one is: the medications that control the movement symptoms can cause mood/behavior/cognition problems - and some mood/behavior/cognition problems can be caused by the PD itself, not the medications.

It can be very difficult to figure out what's the PD, and what are medication side effects. Carefully reading the side effects of the medications your loved one is on can help you and your loved one figure out how to balance controlling physical symptoms, while minimizing mood/behavior/cognition problems.


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