Finding the Workarounds to Help Manage Parkinson’s Disease
Parkinson’s is a progressive illness. It’s continually changing the brain and body as we grow older. Along with changes from my Parkinson’s, my brain is also changing in response to its “owner’s” demands.
I’ve proposed that it’s possible to use this natural neuroplasticity to slow the progression of Parkinson’s, or more accurately, to decrease the disabling effects of the disease as it progresses. I’m learning new ways to live better by applying workarounds.
This is the main goal of my Parkinson’s self-management toolkit: We can act or think in new ways that serve as workaround solutions to address the Parkinson’s effects on brain and body functions. Otherwise, we act in an automatic way, relying on familiar routines or actions that have served us in the past — and often don’t serve us so well now.
There is no neutral state of being. Either we embrace change, or we live with the consequences.
I’m a firm believer that one of the best ways to slow the disabling consequences of Parkinson’s is to self-manage as early as possible. Retraining the brain in the wake of the progressive disease damage is easier when there are more brain cells to work with. The hard part, as it stands now in our current understanding of Parkinson’s, is arriving at an early diagnosis.
The first step after diagnosis, for me, was making a commitment to do everything possible to live a long and productive life.
In the 2018 editorial “Life expectancy in Parkinson disease,” from the journal Neurology, the authors write that, “As of 1967, the answer to the question, ‘How long have I got, Doc?’ posed by a patient with Parkinson disease (PD) was 9.4 years from onset to death. This was the era before levodopa and before most of the ‘atypical parkinsonisms’ other than postencephalitic parkinsonism were distinguishable from PD. By 1993, post levodopa but pre-deep brain stimulation, the figure had improved to 13.1 years, and by 2016 to 14.6 (±7.7) years.”
The data say I can live a long life. I’ve held on to that premise.
The second step is to admit I often don’t know which paths to take. My PhD and clinical experience didn’t give me all the answers. It’s one thing to work with a brain-injured client. It’s another to realize that “patient” is me.
When I started to experience Parkinson’s, I was living that brain-injury phenomena up close and personal. There were few answers that didn’t neatly wrap up the diagnosis, symptoms, and the future. I questioned every new symptom, reluctantly acknowledged the increasing challenges, and had the overall feeling that change was occurring too fast.
Most of my time now is spent exploring positive adjustments I can make. Developing the Parkinson’s self-management toolkit, which I call TBM, has helped. If I can continue to work on threshold management, if I can identify ways to use brain training to redirect my thinking, and if I am aware of mindful movement to avoid physical injury, all these changes can make my life with Parkinson’s better.
Modern medicine tends to assess successful disease management as following a path to a cure. That outlook comes with the founding premise that there is someone or something out there that will make this all go away. On its coattails is the abject resignation we feel when we hear there is no cure.
Encountering the “no cure” reality, the bonded twin of Parkinson’s, brings with it the lure of giving up. But I’m not ready to give up.
Developing and working with TBM is not a cure for Parkinson’s. It’s designed for someone, like me, to manage the disease. It gives me ways to enjoy life with Mrs. Dr. C. I cannot expect someone else to cure me. I must take responsibility for management of my Parkinson’s.
I can embrace a sacred life of living well, compassionate to myself and others. I can always try to “show up” — to be present in the moments when I can and know when I can’t. I’m trying to achieve ordinary calmness and practice TBM daily. Sometimes I end up throwing a pity party for myself. But I try to avoid that dark thinking and find ordinary calmness with a quiet mind.
I hope I can continue to slow the progression. This year seemed like I wasn’t succeeding. But it was also what I call a plateau year — a time when things get worse faster and then level out. Self-management techniques have helped.
What is the “new normal”? I continue to seek out the workarounds to try to manage the worst. As a writer advocating for the Parkinson’s community, there is always this lingering voice of hope that I can make a change not only in my Parkinson’s, but for others as well.
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.
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Comments
Jangam Shekhar
Very Good
Luann Voss
My parents both had Parkinson's. They lived on a farm and may have been exposed to farm chemicals. My dad passed in 2007 and my mother in 2019. Looks as though progress is being made. Thank you.
Jd sherrets
Unless I misunderstand you, I do not appreciate or believe in a “no cure reality”. You should subscribe to the Michael J. Fox foundation newsletter. They say because of recent events in the ability to monitor and assess this disease, they believe there will be big developments in the next 2-3 years.
It’s my understanding they’re over 20 trials on right now.
In addition, there are both “new” and “old” treatments. And better treatments. 14 months ago I got substantial benefit from the Ultrasound treatment. 2 weeks ago I was much benefitted from DBS. New reports say exercise can make a 50% difference! Tennis, biking, walking. Do it all! This is a 3 year jog. There will be another side. I’m certain!
Marjorie E Weiss
I would like to know about the self management that you do.
SUTCLIFFE ROBERT
I’m 75 years old and was diagnosed 8 years ago. I was experiencing several off times per day. Taking large doses of carbadopa/levodopa 4 times per day. I experienced dyskinesia several times per day. Occasionally, for more than an hour. Other than Parkinson’s, I’m in very good health. I had DBS surgery on my right side brain 14 months ago. It gave me back my life. I exercise rigorously 5 to 6 times per week, sometimes 7. I exercise as hard as I can for maximum benefits. Sometimes I have to go home and take an hour or more nap. I’m have cut my medication by 40%. I’m sleeping better. The surgery wasn’t bad. I watched on a big screen tv. (I saw my own brain! How many people can say that!?!) Asked and answered questions in a conversation throughout with my wonderful brain surgeon. There were a couple of uncomfortable moments during the surgery. Putting on the halo, the shots of lidocaine before the incision on my scalp, and the noise when he drilled the hole in my skull were less than 5 five minutes of pain/ discomfort to get where I am. My disease is progressing, so I expect to have the surgery on the left side of my brain in about a year or so. I would highly recommend DBS to anyone whose movement specialist neurologist tells him or her that he or she is a good candidate. Did I mention that I got my life back? lol
David Watson
Can Dr. C give us examples?
Robert Goldner
Very interesting
I would love to find out what the Doctor does physically and mentally to continue his courageous fight
Erika Wolff
Greetings Dr. C.
your sharing has a very calming effect on me right now, I have a sense of not being alone, I like the honesty of your writing.
Erika Wolff
Gail Dons
I am also a physician, and I was also diagnosed with Parkinson’s in 2014, at age 65. It was like hitting a brick wall that I could not go over, under, or around. My life is actually finite! But as I internalized this, I also realized that being dependent on others and being thought a demented geriatric was a bigger fear than dying. By God’s grace, I am still practicing medicine . I have given up my surgical privileges, and there will come a day when I will also hang up my stethoscope. God promised me that my life would always have meaning, that I would always have work to do, whether in medicine or in some other way…and that life would be good (Jer 29:1” …plans to give you a future and a hope”) Notice I said “good”, not “happy”.I can’t deny the physical changes that have come, and some of them do not score high on my happiness scale,. But I work each day to exercise the skills I have so that I can continue to be useful and ready for whatever job He has next for me. One thing I have found very fulfilling is participation in clinical trials. So many people before me have volunteered to experience the unknown so that today I could have Sinemet, or any one of the other drugs that are mainstays of current therapy. I don’t know if I could be as brave as those who underwent DBS in its early years, or who are volunteering to have stem cells injected into their brain, but I have gladly volunteered to place several subcutaneous cannulas into my abdomen every day, and disturb my fashion statement by wearing a bulky pump to see if there are benefits to getting my levodopa/carbidopa this way. Perhaps this is how I can contribute to others’ future and hope..
Mike
Dr. C,
Thought provoking piece as alway. For me this written response is a part of my Brain Rewiring. My newest part of Mindful Movement comes from Eastern Medicine a combination of Accupuncture and daily Qui Gong exercise routines. This approach combined with Massage and twice weekly Physical therapy makes my disease management a full time effort. Since my first diagnosis this has been a focus for me. Thank-you for your leadership and encouragement. Blessing, Mike
Ana María Tamayo (esposa de Ray Feeney)
Thanks dr C. for offering us so wise words.
It reminds me of Joan Didion quote about character as "the willingness to accept responsibility for one's own life — is the source from which self-respect springs"...
A hug for you and mrs C from Ray and myself based in Perú.
Dr. C.
The columns in July and August will expand to clarify the Parkinson's Self-Management Toolkit. Stay tuned!
Thanks to everyone for your comments, encouragement, new directions to expand our thoughts and suggestions. It is what keeps us going... and going... and going.... until September first when we are taking a month "off" to regroup and work on consolidating book 2 of the "Possibilities with Parkinson's: Self-Management".
Dr. C.
Dr. C.
Hola! Hope you and Ray are doing well. Nice to hear from you again. In our thoughts and much thanks for following along with Dr. C. and Mrs. Dr. C.
KAthy Murray
I was diagnosed a year ago @77. Always been so active, worked as a nurse. Felt like I’d been hit with the proverbial board.
This last few weeks I have finally recognized this is not a death sentence. I have hope and your article helped so much. Thank you.