How Do You Know When Your Parkinson’s Is Getting Worse?
One of my biggest problems with the current science about Parkinson’s disease is the way that progression is described.
Early stages of the disease are poorly understood and explained. The transition from early to middle stage also lacks a firm definition, particularly if one looks at the disease as a spectrum phenomenon. Given the spectrum presentation of the disease, it is likely that progression, particularly during early and middle stages, is widely diverse in symptom representation.
I am extremely grateful for the slow progression of my Parkinson’s disease. I know that this is a variable that can affect many patients. I have offered some ideas on how to slow the progression, but what’s missing is a description of what the progression from early to middle stage might look like for my atypical case of Parkinson’s. Please keep in mind that I have a different definition of early stage than what is commonly found in the literature.
Following is a list of my early- to middle-stage symptoms:
1. I have increased numbness in my right foot. My foot feels like it is encased in concrete, making it difficult to maneuver, and I can’t feel it when walking. Both my knees and back hurt after walking. If I’m not paying attention (being mindful), then I experience increased balance and walking problems.
2. Now I’m developing numbness in my left foot, but it’s mild, unlike my right foot.
3. I’ve noticed numbness starting in the little finger of my right hand. This makes it harder to use the computer mouse.
4. I now have consistent numbness on the right side of my face with episodic facial spasms that can be extremely painful. More studies are identifying these symptoms of peripheral neuropathy in Parkinson’s patients.
5. My sleep disturbances have increased, and I wake every two to three hours at night. My waking dream motor activity occurs more often. To counteract this, we adjusted my levodopa medication schedule, which has reduced nighttime dystonia and allowed me to fall asleep earlier than 2 a.m.
6. I have more episodes of swallowing dysfunction with liquids, particularly when I’m not paying attention.
7. My fatigue increases with attempts to sustain moderate motor activity. I can tolerate physical activity for only two hours before I need rest. Riding in a car for more than two hours is painful.
8. Deep fatigue severely affects my mental concentration. Now I can only sustain concentration for about two hours, after which brain fog sets in.
9. Depression and anxiety are now real problems, not just occasional surges. Unexpected situational stress combined with deep fatigue causes increased emotional liability, which is becoming more difficult for me to self-regulate.
10. Temperature regulation is more of a problem — I alternate between sweating and freezing feet. I have little idea if my body is “cold.” My wife will say my skin temperature is quite cool, though I have no awareness of it.
11. I experience olfactory hallucinations. Episodes occur once or twice a week, with no discernible physical cause from an external source. They last up to 30 seconds then disappear.
12. I notice persistent neck and back pain that can’t be attributed to muscle overuse or poor posture in a chair or bed. It is a sensation particular to Parkinson’s and my off periods.
13. Levodopa no longer works as well. My off periods are longer and more intense. More time is needed to manage symptoms, which has become a full-time job.
All of the symptom changes increase strain on family relationships. It is more difficult to schedule family time when symptoms complicate participating in activities. Relationships can pass from disappointment to resentment quickly.
Mrs. Dr. C and I work to educate family and friends about what is going on in our lives and always share our love. In doing so, we try to refocus on the good times and our relationships beyond the Parkinson’s symptoms.
As symptoms change or increase in severity, accommodations must be made. One of the accommodations we are making is changing from a weekly column to semimonthly. We hope you will continue to check in with Dr. C’s “Possibilities with Parkinson’s” on the first and third Fridays of the month.
Many people with Parkinson’s are experiencing an increase in symptoms during these difficult times. Have you experienced an increase? To help our readers further, we hope you will share in the comments below any increasing or new symptoms you have experienced recently, and how you manage the challenge.
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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, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
About the Author
John Hughes
This is how my Parkinson symptoms have progress:
I could walk nine holes of golf and feel a little tired. Today I ride a golf cart. I barely can walk four holes without feeling fatigue. When swallowing medication and food was never a problem for me. Now I pay attention when swallowing med's or food. Need more water and second and third tries to swallow. I used to be able to fall a sleep very easy. Now I can spend 1-2 hours in bed before I fall a sleep
Kathy Hulst
I am in year 17, after a Parkinson's DX, having been DX'd in Fall of 2004. We have found that a single 25/100 mg L-dopa relieves the pain of any cramping muscles (Dystonia). I sometimes don't make the connection between "a sore foot and the need for more dopamine. But the extra L-dopa really relieves the pain and tides me over until my regular RYTARY OR Sinemet dose is due. Maybe a professional MDS doc or nurse NP could explain how this works and perhaps a caution about overdoing the L-dopa dosage. How much is too much?
Daniel Novak
Our trajectories are very similar, down to the two-hour windows of productivity. My sleep window is short so I am awake now after 2 hours of sleep. "I should go start on my project now!" But my total output for the day will remain the same due to the off time, neuropathy which will cause pain and balance and gait issues, dystonia and its muscle pain, brain fatigue and more...
Suzanne Shahan Aloisio
Wow! Reading this makes me get off of my pity pot and appreciate that my husband's symptoms are mild compared to all of these. As far as progression goes, he has accumulated additional symptoms in the 8 years he has been diagnosed, but none of them has gotten worse. And one of his initial symptoms, fatigue, has gotten much better, I guess due to PT and exercise: an hour per day on his Theracycle and a walk outdoors,
and Zoom boxing classes 3 times a week. We don't know what finally motivated him to get moving. Initially fatigue, apathy and depression kept him in bed a lot. I wish I had know that he would get better, but I might not have believed it at the time. Right now his biggest problem is bowel incontinence. We are working with a gastroenterologist and hoping that problem will get better, too. Thank you for giving me a lot to be grateful for, especially that he is in no pain. What a blessing!
Edward Leitzinger
I am 68 years old and have been a runner since age 25. I have had PD for about 10 years I estimate with being diagnosed in 2013 2 days before Thanksgiving. I do have the neck pain and hand tremors during off hours. I also have a wind fan bike for days that I don't do wind sprints. I do three miles combination sprints and walking. I used to be a 6 mile runner. I can say that exercise definitely helps. I do get muscle freezes on my hamstrings if I lay in bed to long on my back. Exercise all you can. Ice packs and heating pads also help.
james peterson
i am 80 years old and my PD was diagnosed shortly after total knee replacement. in place of my regular running i am doing Nordic Walking which gives me the goal of competing in local 10k`s and maybe a 20k. a person needs goals and this is mine for now.
Harris Caroline
I am experiencing many of these issues and sometimes think I’m in middle stages and sometimes think I’m
in advanced stage. Balance, walking, freezing and falling frequently . Speech problems seem to accompany these symptoms. Most concerning are my depression, anxiety and emotional lability. Sleep disturbances are very problematic as well
Definitely makes you think if life is worth living
Diagnosed in 2014 as well
Sara Kerr
Thank you. I often feel everyone’s version of Parkinson’s unique.
I’m curious what these olfactory hallucinations are. I’ve never come across that in the literature before. And I’m also curious which lifestyle changes are helping you manage your Parkinson’s or slow its progression?
Matt Lafleur
As someone with a progressive disease myself, I know how raw and painful it is to talk about symptoms. Thank you for opening up for your readers. I know that it will encourage so many reading.
Roger Paschall
My mother's form of Parkinson's is progressing very rapidly. She has had nearly every symptom in the last 6 months advance quickly to the point that she can no longer care for herself. Prior to that she was healthy and an active 74 year old. We finally have a neurologist appointment next week which seems too little too late. We pray that proper diagnosis and meds will give her some return in function. Ideally, she should have been seen by the neurologist 6 months ago but it was 3 months ago that her GP finally made the referall. Attempts to "fit her in" over these last few months have proven futile. Other neurologists we're contacted but they were also booked. Knowing that her case was "different" did not facilitate a more speedy pace of medical attention and that is where the system failed us. We have barely managed to keep her at home, taking shifts to see to her needs. Home health has been involved which we are thankful but has had little to no affect in the rate of this diseases progression. I hope to post again after her neurologist appointment that we have some positive news. All the literature I have encountered, however, does not encourage me. I think some patients like my mother could greatly benefit from earlier intervention but the system's current approach does not identify this and allows this form of the disease to go beyond the point of no return..
geoffrey vaughan
My progression was very slow, and still is. No complaints. Evidently, I had Parkinsons for a few years before i was diagnosed.
Sometime in 2013 I could not keep up with my boss' fast pace of walking.. The first thing I noticed was my handwriting went to hell, I liked to write in cursive, and had been complimented on it.
The day I retired, 8/15/2014, my daughter and I played tennis, another favorite past time. I had trouble seeing the ball and while chasing after a ball, running backards I lost my balance and landed on my back, no problems.
I went for a 6 months checkup soon after the fall and my GP noticed a slight in my right thumb and suggested that I see a neurologist as he thought I may have Parkinsons, how right he was. The neurologist confirmed Parkinsons, prescribed carbadopa levadopa 3x per day. Hardest part of that is remembering when to take my pill. I found out I had prostate cancer in 2015, went through radiation therapy. All is well there, except occasional bowel incontinence.
2016 i started being treated for glaucoma, drops have that under control. My GP retired in 2019. My new GP is treating me for severe hip pain. PT 2x a week seems to be helping.
All in all, I can't complain about my Parkinsons progression. I mow 12 lawns 2x/month. Fatigue is not a problem. Sleep is not a problem.
As I mentioned my greatest complaint is my handwriting, I have tried everything I can think of to at least make it legible to no avail. Any suggestions would be greatly appreciated.
fatige
gp
Sherri Maranto
I was diagnosed 3years ago. I was hoping my right hand tremor was essential tremor like my dad’s and others on his side of the family but I had stiffness and a “cog wheel” motion in my right arm. Before I was diagnosed I also had a strange sense of smell. I would smell chemicals or perfume and other scents that my family didn’t smell. My dr. Sent me for anMRI to make sure I didn’t have a tumor which I don’t have. I noticed a few years later that I couldn’t multi task at work and had very bad anxiety. I retired early. This was before I was diagnosed. I now have back and neck pain as well as akathisia sorry spelling, and a drop foot. I’m 63 and disappointed about the diagnosis. I used to dance and walk a lot. I have good and not so good days.
Anthony Thurston
I recently discovered Parkinson's. It seemed to be slow at the beginning. Now it's coming on like gang busters. It has affected my thinking, my gait, and -now-my personal feelngs about life and living. I have a wonderful family--very supportive and caring. I am 82 and now have lmitations that I have never had before.
Kerrie Khoudeir
I was diagnosed with Parkinsons 5 years ago at 46years of age. Recently I have noticed more off periods, with an increase in stronger tremors. I am also beginning to suffer with poor concentration, fatigue, cramping and restlessness. Over the past few weeks, I have noticed that I clench my fists while extending my arms out. I only do this when I get restless.
I have begun Zumba and Bellydance fitness classes which help with my energy levels and I am looking at remedial massage to help with the stiffness of my neck, shoulders, arms and back.