At what stage were you diagnosed?

[Jo S.]

Despite people trying to categorize PD into stages, there aren’t really any clearly defined ones. Charts mostly emphasize motor symptoms (except for dementia), overlooking a multitude of other symptoms that affect people with PD quite differently and at various times during the course of the disease. In addition, some people with PD never experience tremor and many never get dementia. Others may have symptoms from various so-called stages all at the same time. I personally feel that categorizing PD in this way is counterproductive and only serves to scare and mislead people with PD, their support team, and the public. Just my two cents (your mileage may vary).

[Robert]

Hi Ally

I’ll start off.

H & Y Stage II and 1/2.

Thanks,

Robert

 

[Ally]

All of your points are well taken, Jo. Did you have a formal conversation with your physicians re: their philosophy on discussing stages, or is this just something that evolved naturally without discussion? Just curious if it was your request not to use stages or if the doctors just practice that way. Thanks again for sharing your view!

[Jo S.]

Hi, Ally. I was diagnosed earlier this year. Since then I’ve seen two doctors (in the same practice) and the PA about four times. Nobody ever brought up stages. I didn’t know about them (or really anything about PD) at my first appointment, but no one has ever broached the topic. I don’t have mcuh interest in boxing my symptoms into a “stage” category, and it seems that this practice (which is associated with a very large learning and research center) doesn’t put much weight in doing so either.

Some days I feel as though I have a few stage 3 or 4 symptoms, but most of the time I imagine I’m in a stage 1 or 2. But, really, who knows? Things fluctuate day to day (and often hour to hour). I’ve always eaten well (plant-based, mostly whole foods), and I exercise daily, watch my weight, don’t drink (or use drugs, except for my PD meds and medical cannabis), and work full-time (for now). Despite being only recently diagnosed, I’ve had PD symptoms for at least 15-20 years. So if you take that into account, I guess my disease has very slowly progressed.

[Robert]

Hi Jo S

I did not see your post before I posted my info and did not mean to seem to ignore it.

I sorta agree with you.  A lot of this labeling doesn’t solve any problems.

But for me, it is important for planning purposes to have some feel for the prognosis.  We each have to figure out who might care for us  and who might care for those we are now caring for when we can’t do that anymore,  with all the financial and logistical stuff that comes with that.  I know that my PD progression is rather quicker than expected.  So it is useful to have some feel for what the Doc thinks of my case in relation to some metric.  This staging I believe is just the Doc’s way of documenting that in their vernacular.  It is kinda of a cold thing to label a person in such a way.  I agee with that sentiment entirely.

Best wishes to you on your PD journey.

Robert.

[Jo S.]

Thanks, Robert. I can appreciate your perspective. My docs don’t use “stages,” or at least they haven’t with me, and I don’t know how I’d feel if they did. The progression of PD varies so much for each of us, which makes it difficult for the majority of us to plan or figure out what may lie ahead (although I’m not sure I want to know that!). I was only diagnosed earlier this year, and although I feel as though I’ve spiraled downhill somewhat since learning what I have, I’m not sure how my being categorized at a “stage” would be beneficial for me, but I understand why it would be for you.

[Ally]

I really appreciate your perspective on this. Thanks for sharing, Robert.

[Jeffery Hill]

My neurologist has never referred to stages in our discussions, but she does inquire about each of the major symptom areas on each visit (tremor, rigidity, balance, sleep, constipation, etc).  The good news is that the symptoms don’t seem to be advancing very quickly since initial diagnosis 3 years ago, which I credit to a big up-tick in my exercise routine, and a reduction in stress facilitated by retirement.

[TimR]

Jeffery, I echo your response.  I was diagnosed almost 2 yrs ago, and the combination of factors in my life at that time seem to have advanced my symptoms as I recognized light tremors beginning almost 4-5 yrs ago.  I retired recently and that along with other stress reducers (finishing a new home after taking control from our contractor) has made my progression seem moderate at this time.

[Ally]

Happy to hear that reducing your stress has had a positive impact on your PD, Tim. What do you like to do now that you’re retired?

[Ally]

That’s awesome to hear Jeffrey. What do you like to do to stay active? Do you work out every day?

[Deleted User]

Stage 1 I had a tremor in right hand that sent me to the doctor. Primary doctor said he didn’t think it was anything to worry about sent me to get MRI nothing there. Had to insist on seeing neurologist I suspected Parkinson’s, 10 minutes into visit with neuro diagnosed me with stage 1 Parkinson’s 3 years later I’m at 1.5

[Deleted User]

Marcus, sadly, I have heard that a lot…that doctors can’t diagnose pd.  🙁 I had a good primary care doc. When I told her my handwriting was terrible she told me to see a neuro

[Ally]

I’m glad to hear you self-advocated and got the referral you needed, even if your physician was initially skeptical. Do you have any advice for others who might be in that situation right now?

[TimR]

Ally and others, my primary symptom is tremors in my left hand, my non-dominant hand fortunately.  My hobby for last 10 yrs is woodturning and other woodworking.

When I’m working with my hands and jamming to classic rock or modern country music, there are no tremors, no PD for the most part.  To destress in general, I go off into a zone of doing something, could be woodworking, cutting and splitting firewood or taking the tractor out for some chore.

[TimR]

To answer thread questions, my doc I’m seeing about 2x yearly, and he’s not given me any rating as I recall, only that I’m still early.

Id have to believe I was in earliest stage when diagnosed, but I may have to review the definition for earlier stages.

[Deleted User]

tim, you have found your cure!  woodworking!  I find if I do art, it is very mindful and I forget about PD… Now if only I had the motivation….

[TimR]

I would like to believe part of the reason for understanding where a patients PD is (stagewise or any somewhat objective measure), is to better understand PD and the correlation from one patient to another.  Having a broad pool of folks (like us + the rest of the PD community in the world ) who can share what works, what doesn’t and what worsens symptoms is invaluable, especially when large pools of folks can add their input and place into some category for better reference to help others .  Hey, a person can dream, right!

 

[Deleted User]

hi tim, do you know of dr. laura mischley (naturopath doc). she has been analyzing pd patients for years and has a good working knowledge of pd. she is building a db of info entered by pd patients. https://redcap.bastyr.edu/redcap/surveys/?s=ts6Eh7

[TimR]

Jean, Not familiar with her or research.  I opened the link, but couldn’t get it to calculate.  May just need to try a different browser.   Thanks for the link.  The survey looks pretty thorough it seems with most common issues.

[Deleted User]

tim, you wont see the results, but dr. m has used the survey results and has come up with some commonality among pd patients. i went to her pd summer school and wrote about it: https://parkinsonsnewstoday.com/2019/09/03/top-six-parkinsons-summer-school/