Understanding What Parkinson’s Progression Means to Each Patient
Every day following the ruin of stagnation, it seems that I have progressed from early Parkinson’s to a moderate stage of the disease. But I can’t be sure. Many other factors, including stress, injuries, medication changes, and aging, could be making it look and feel worse. To appease my quandary, I dove into the internet, searching for elucidation about Parkinson’s progression.
We watched as Michael J. Fox and Muhammad Ali were changed by the disease. Granted, their Parkinson’s symptoms were dramatic: Their body movements gradually became less fluid, the tremors more pronounced. Over time, the movement challenges became more noticeable, signifying progression. The Parkinson’s community uses the terms “early,” “middle,” and “late” stage to describe progression. It mostly makes sense and matches what medical providers identify with patients. But it doesn’t help me in my search for well-being possibilities.
Progression for me is more than “early,” “middle,” or “late.” I accept that the disease will cause changes in me and my life. But it would be helpful for my wellness map if some of the pitfalls could be marked, “Danger ahead!” or, “Here’s a list of supplies,” to get me through the hardest parts of my chronic disease journey. Being well-prepared is an essential part of wellness success. The progression of Parkinson’s is not about stages — except in a general way. Rather, it means having some idea about what can be done to slow the progression, or, failing that, how to recognize when progression is happening. Useful information about progression would help guide us through what is sometimes a tortuous journey. It might make the trip easier.
Chatting with the Parkinson’s community reveals the entrenched idea that progression is unique to each person. It would be helpful if our understanding of progression could provide for each patient more details than, “It’s unique to everyone, and you will know when you get there.” So what’s holding up progress toward understanding disease progression?
Medical professionals determine Parkinson’s progression by a system involving a physical exam, patient report, and sometimes a standardized measurement tool or questionnaire. That system fails when all that we are told about progression is, “You’ll know it when you get there.” We need better information from early Parkinson’s stages to understand progression to middle and beyond. Data from the existing collection system is insufficient to give a clear understanding of what progression means to each patient.
I recently read an article in which the authors discuss the merits of the retropulsion test to evaluate postural instability in Parkinson’s. The three methods are: “(1) the pull test as described in the MDS-UPDRS scale; (2) using an unexpected shoulder pull, without prior warning; and (3) the push-and-release test.” Although the test is considered the gold standard, the authors state that “the outcome can vary considerably due to variability in test execution and interpretation.”
The authors state that the test fails to predict future falls, explaining that falling results from the “complex interplay between gait, balance, cognitive decline and environmental factors, and the retropulsion test captures only part of that.”
It is difficult to spot early symptoms during a short office visit once every three to six months. Increasing the speed of care by reducing the duration of clinic appointments has not improved healthcare for this ailing columnist. It hinders the ability of the healthcare practitioner to get to know the patient better and increases the chance of the latter being categorized as “that patient with Parkinson’s.” The provider can’t see all the effects of the chronic disease, even with a longer visit.
We have good and bad days, on and off periods, and life circumstances — all of which make data collection on Parkinson’s progression from a 15-minute office visit problematic. It makes sense that early diagnosis and proper treatment should make a difference in progression. As far as I can tell, no adequate longitudinal studies exist that describe variation in progression as a result of treatment, or lack thereof. This applies even to exercise, my favorite Parkinson’s treatment to slow progression, and the effects of stress as my “most need to avoid” situation to prevent speeding up the progression.
In the next column, I will offer a possible solution to the Parkinson’s progression research problem.
***
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
About the Author
Comments
Gavin Mogan
First, I’m not sure that there are better ways of measuring progression. Consider the infinite number of variables. I’m also not convinced there is a lot we can actually do to slow the disease. However, there are endless actions we can take to progress ourselves.
It’s not about the progression of the disease, it’s about the progression of me. Who cares how we compare to anybody else? Do we really want to believe everybody else is doing worse than we are?
Our community seems to now suffer from progression obsession. Our response to Parkinson’s is everything. I’m done outsourcing any judgment of myself to a doctor, a chart, a disease, anything. There are far too many actions I can take on my own behalf to become a better person than to spend inordinate time on declines out of my control.
Dr. C
Hi Gavin ~ I agree whole-heartedly about being proactive. It's all about the possibilities, not for the "next guy", but the possibilities for me. This includes the possibility that someday we will be able to measure progression in Parkinson's. See my column on this topic.
Dr. C.
Marty Mernitz
Very good points and well said. I would love to participate in a group to share experiences, research, and a plan to fight progression of the disease. My neurologist seems only interested in increasing medication and writing prescriptions and advising to keep exercising. My goal is lowest medication needed to maintain quality of life. Doctors also seem unprepared and uninterested in understanding role of other medical conditions which may be contributing to symptoms and progression, i.e., thyroid problems, cancer. Thank you for your time. Please feel free to contact me.
Dr. C
Hi Marty ~ Thanks for the post. Your comment points out the need for a clearer understanding of progression so we can sort that out from other ailments and stress. I think you will find like minds on the BioNews website and the forums for continued discussion. I appreciate your reading my columns and hope that they offer some "possibilities with Parkinson's".
Dr. C.
charlie aarons
thank you thank you thank you thank you thank you thank you dr. c
Dr. C
Hi Charlie ~ You're welcome, you're welcome, you're welcome. It is my honor and pleasure to be able to write this column and support from you and other readers keeps me going.
Dr. C.
Don Harris
PD progression seems to vary widely. I am very fortunate in barely changing since being formally diagnosed almost 5 years ago. Subtle symptoms were obvious years before but have not noticeably changed. A dose of 100mg of levadopa 4 times daily seems to keep everything in check. Are there others who are also progressing very slowly?
Dr. C
Hi Don ~ I have a similar history but have found after 10 years since diagnosis that I maintain levels of functioning and then seem to drop the baseline to the next progression. This year was one of those yearly drops, and unfortunately coincided with some other medical issues. I have found that journal-keeping of symptoms to see if changes I notice really sustain over time. See my reply to Jacqueline in the comments section -- the "zigs" and "zags" will occur. I hope that you continue to progress at a rate you can manage. Thanks for sharing and I really appreciate your taking the time to read my column and the work that BioNews supports for the entire Parkinson's community.
Dr. C.
Jacqueline Gilbert
As the wife of a Parkinson's patient for the past 20 years, watching, trying to help ease through changes we did not know were coming, being frustrated in not understanding this very multi-faceted disease - has left both of us with dis-ease. The worst part for us is that there is NO progression - there is up and down, in and out, able and not able, at any time, on any and every day.
Dr. C
Hi Jacqueline ~ I couldn't agree more. Part of the problem is that the disease manifests itself differently every day -- sometimes every hour. It doesn't seem enough to just say it's a "bad day" or a "good day". It isn't a straight-line progression. There are "zig's" and "zag's" and unexpected events. The best thing my wife and I have found is to be as flexible as possible when things change, to be honest with family, friends and providers that we may have to change plans, and to support each other and other folks who try to manage the disease. Thank you for reading my column and I hope that there will be opportunity for my experience to help you and your husband.
Dr. C.
Derek C Marshall
The problem, as Dr. C says, is the difficulty of separating disease symptoms from those of aging, as I see it, going into my late 70s.
I don't have PD, but I did suffer a case of colchicine poisoning last Spring. So now I wonder if my balance, cognition and other factors were effected by that, or is what I feel simply the passing of time.
jhonpeter
Thank you for your post. This is excellent information. It is amazing and wonderful to visit your site
Dr. C
Thank you for your kind words and I really appreciate the time you take to visit BioNews Services and the Parkinson's Today columns. I am pleased that the information is helpful and I will continue to enjoy sharing thoughts, ideas and suggestions in the year ahead.
Dr. C.
peter
hi ive been recently diagnosed and havent had meds yet so im apprehensive taking BIG PHARMA drugs and the horrific side effects. Im going on a KETO diet and hoping this will slow things down , are you aware of anyone who has done the same.?
Id be very thankful!
Dr. C
Hi Peter ~ I'm not aware of the KETO diet but there may be others who have explored this option. I think readers would like to know more of what you find out about the KETO diet. Appreciate your reading my column and hope that there may be some good information to share and apply in your management of PD.
Dr. C.
Maria Cesena
I'm considered in the early stages of PD, however, have been told I've probably have had it since my early 40s and I'm now 53-years old. The neurologist has described my symptoms as mild, so it's considered Stage-1. Yes, I have a resting tremor that seems to worsen when I tire and also, makes my left hand shake a bit. The right side of my body is considerably weaker than my left. I've had a number of falls. One, serious enough in 2013, that I broke my back and required surgery. However, all of these events are considered mild!
Yet, I have severe insomnia. I rarely sleep beyond 2-3 hours a night. I have severe, severe chronic fatigue. I have terrible body-wide pain that is not alleviated with OTC medications. I suffer from chronic constipation, on top of that I feel the constant urge to empty my bladder and I don't need to go at all.
My right hand shakes terribly when I try to apply make-up, so much that I have to hold it with my left hand to control it. My female neurologist suggested I consider having my eyebrows tattooed, as well as my eyelash line for the appearance of liner and lip line.
I can no longer shampoo or style my own hair. I can't push a vacuum cleaner, I'm just not strong enough. She suggested I hire a house-keeper and I live in a studio apartment!
Now, the most frightening symptom to emerge is choking when I drink water, any fluid and try to eat. I can't seem to get it down my throat, it gets stuck. Sometimes, it feels like it's gone down my wind-pipe and I end up coughing and sputtering for a long time with tears streaming down my face. My appetite has decreased substantially because I want to avoid these episodes.
I've tried to discuss all of these symptoms with my neurologists and I'm consistently told these symptoms aren't seen until the later stages of PD and not in the mild stage that I've been diagnosed. What, exactly is going on with me if these aren't symptoms of PD? It certainly isn't my imagination that I'm considering using a walker because of the constant sensation we're experiencing an earthquake whenever I stand or walk and that I no longer walk in a straight line; and, I feel exhausted after a short walk.
There are a myriad of other events I can cite, but the list would be so long.
How is the progression of this disease quantified? My symptoms are all subjective and I am certain it is an indicator I am progressing rapidly from the "mild" stage to a more severe state, perhaps, stage two. I find myself weepy almost all the time, asking the Lord to take me in my sleep before I lose all independence much too quickly.
I am aware this disease is "unique" to each person. If, this is the accepted standard then, why won't my doctors listen to my concerns.
Dr. C
Hi Maria ~ From your description of the problems patients face in understanding the progression of Parkinson's, you have very well articulated many of the issues. Thank you very much for this post. Your symptoms may not match other's exactly, but the problems that you encounter in making use of clinical information regarding progression is one of the major problems that people who have Parkinson's face. I share in your frustrations you have with the disease and I wish you the best. Part of the problem is having the providers see the worst of times during a short office visit. Please continue to check in with the columns at BioNews Services to connect to others who have the same concerns. The forums are a great way to reach out to support each other. Thank you for reading my columns and I wish you the very best.
Dr. C.
Bonnie Becker
Dr. C
Are there Parkinson’s sub types? Also, did I misread your statement that you don’t fully subscribe to the theory that exercise slows down the progression?
I was recently diagnosed by a neurologist in a very casual manner. I have a slight tremor in my left hand which has remained the same for almost two years. I’m definitely weaker on my left side, but had major back fusion surgery 6 months ago to fix stenosis resulting from scoliosis. I assumed the weakness was the result of the surgery.
I exercise strenuously (weights, Pilates, and step classes) 7 hours a week and have been regularly doing so for 15 years. I’m 70 years old.
How soon should I expect to get worse and what are your recommendations going forward?
Thanks so much,
Bonnie
Dr. C
Hi Bonnie ~ in the column that follows this one, I talk more about the problems of our collective understanding of Parkinson's Disease progression. I am a strong advocate for exercise and have been for all my life. The progression I have experienced has been a realization that my body isn't 40 years old any more so I have to be more mindful about how much and how intense my physical activity is. I try to allow as much recovery time as exercise time. Yours is a great comment and I hope that you continue to share your insights. Thanks for reading my columns and following the Parkinson's News Today website.
Dr. C.