How I Deal with Chronic Pain in Parkinson's
A large number of aging adults (65+ years of age) and many of us with Parkinson's are dealing with chronic pain. However, chronic pain is not a mandatory part of normal adult aging. You control how you manage chronic pain. Here is what I do, and herein is my basic philosophy. I can summarize it in one word: proactive.
Defining chronic pain
Recently, the World Health Assembly defined chronic pain as “persistent or recurrent pain lasting longer than three months.” Furthermore, they included optional specifiers based on pain severity (intensity, pain-related distress, and functional impairment) and psychosocial factors. From a brief review of this field, there is no clear consensus for defining chronic pain, except that it a real medical issue that mandates well-orchestrated care by physicians and other allied fields and experts in healthcare. Lynne Tillman said, "Now that I am conscious of the world of chronic pain when I see somebody walking down the street who's having trouble, I feel a sadness for them. I notice."
Chronic pain in Parkinson's
I recently posted a description of chronic pain in Parkinson's. Briefly, there are six steps that our healthcare providers may use to deal with our chronic pain, including (1) your quality-of-life matters; (2) keep a "pain diary"; (3) referral to a Physical Therapist; (4) carefully assess your dopaminergic-based drug therapy; (5) the guide called the Beers Criteria (American Geriatric Society), which helps your healthcare provider in improving medication safety in older adults; and (6) non-pharmacological intervention including different forms of exercise (especially non-weight-bearing activities) and other modalities.
Keep in mind that you must be proactive in your approach to managing your chronic pain. Just like our Parkinson's is an individual disorder in terms of symptoms and rate of progression, chronic pain will also be individually expressed in anatomic location, the degree of discomfort, and how it alters our quality-of-life. My approach has worked for me. Moreover, I'm happy to describe it here briefly.
Teamwork makes a difference
My Neurologist and Internist are available by e-mail to answer my questions outside of my planned visits. Additionally, I routinely seek the advice of two key healthcare experts within the Movement Disorder Group, our Social Worker and one of our Physical Therapists. Separately, I have good relationships with several other Physical Therapists and researchers in the world arena of Parkinson's disease science and research. Thus, I believe that from what my 'constellation of healthcare experts' recommend, I can make the best-informed response(s) to manage my health, and especially here, chronic pain. Phil Anselmo remarked, "You can only exist as far as your mind will allow you to exist, and I think chronic pain will stop time dead in its tracks. You feel like you're the only one, and how unfair it is, and a million different feel-sorry-for-yourself type feelings."
My management approach
My chronic pain is primarily lower back and neck. Occasionally, I have foot and wrist/arm pain, but principally, it always includes lower back and neck. It was important to be an active participant with my healthcare team to formulate a plan.
My Neurologist and I have worked hard to optimize my dopaminergic-based drug therapy (necessary since I am still working full-time and balancing many daily aspects of a career in academic medicine). My dopaminergic-based drug therapy now includes carbidopa/levodopa and a dopamine agonist (oral and external patch).
Physical therapists gave me detailed exercises for my lower back and neck. My treatment approach was to exercise the areas as required by the PT recommendations. My maintenance plan is to use stretching and training on the regions causing the chronic pain. Again, stay engaged and go after the area(s) that are chronically in pain.
In the initial time-period following my Parkinson's diagnosis, with daily guidance by our UNC Physical Therapy and Rehabilitation Group, I did LSVT BIG® with Dr. Diane M. Meyer. What a great set of exercises for a person-with-Parkinson's (PwP) to use to help their body be more regular, and it helped my chronic pain. It made a difference. I still use these exercises on an occasional basis.
I then advanced to PWR!Moves® (PWR = Parkinson Wellness Recovery), a more dynamic set of exercises developed by Dr. Becky Farley. Pwr!Moves® routines allow a PwP to maintain or restore skills that deteriorate and interfere with everyday movements. Dr. Farley also was responsible for the LSVT BIG® exercise program. I try to do PWR!Moves® very frequently, and it makes a big difference for my chronic pain. I routinely get advice from the experts at the PWR!Gym in Tucson, AZ, especially Dr. Jennifer Bazan-Wigle and Dr. Farley. Deep-tissue massage has also provided some relief in my chronic lower back and neck pain.
Neural Reset Therapy® or NRT is a specialized form of therapy. NRT applies the laws of physiology to approach the affected body area directly. The nervous system controls muscles, and the trained NRT therapist resets the nervous system to release a tissue from excessive tension. With this reset, NRT renews the area, and the pain is reduced. It truly works. I am fortunate to have access to an NRT-trained medical massage therapist (Kristi Vloedman).
The final form of treatment I receive is by chiropractic care. At first, I was skeptical of this type of treatment. However, I have found much relief in my back and neck by routine visits to my chiropractors in Chapel Hill. A chiropractor focuses treatment of neuromuscular disorders, usually by manipulation of the spine. I am fortunate to have two phenomenal chiropractors (Dr. Shannon Bigbie and Dr. Avery Garrabrant at http://www.ignitechapelhill.com/) because they use a wide range of techniques and technology to treat both my back and neck pain, and they stress education and awareness of your physical condition.
To recap, I use several different types of treatment plans and this uses several healthcare providers and experts to manage my Parkinson's and the chronic pain involved in this complex neurodegenerative disorder. Likely, in the absence of chronic pain, I might still have followed this treatment plan to deal with my disease.
The reality of pain in Parkinson's
In a recent study, Rana et al. found that PwP had significantly more pain than their age-match controls without Parkinson’s. Additionally, they reported that PwP with symptoms of depression had significantly higher levels of pain compared to control patients without depression.
Your chronic pain in the presence of Parkinson's is real. Cheryl Richardson said, "If I were somebody dealing with chronic pain, I would see it as a challenge to manage my mind; even knowing that the effect of my thoughts is not only affecting my experience, but it is absolutely affecting the state of my health." You need to manage chronic pain carefully because it's part of your life-equation for quality-of-life. Use your experts to make a plan, try it, be proactive. If it is not working for you, revise the plan, but stay engaged. The goal is reducing your chronic pain; please keep working on it.
Do you think there is enough awareness of Parkinson's disease?