Welcome back fighters, care-partners and fitness professionals! At Bridges For Parkinson’s, posture/vertical stability is a big concern and one we address in every class. Why? Because a strong, vertical spine means reduced falls, better gait, less back pain, increased lung capacity, ability to enjoy activities and live independently. However, fitness professionals observe some folks living with Parkinson’s disease having a severe forward lean at a 45-90 degree angle.

What is this? What causes it? And, is there a solution?

This forward lean is called “Camptocormia”, derived from two Greek words: Kampto- (To bend) and Kormos (trunk). Camptocormia was first documented in the 17th century by the Spanish painter Francisco de Zurbaran. In the 19th century, Brodie wrote about it. Later the term was coined by Rosanoff and Saloff who described the abnormality in World War 1 soldiers traumatized by shell shocks.

Camptocormia is defined as bent spine syndrome (BSS), an abnormal flexion of the trunk, appearing in standing position, increasing during walking and abating in supine position.

According to Srivanitchapoom and Hallett, approximately 3%-17% of the Parkinson’s population suffers from Camptocormia. See below examples of Camptocormia syndrome.

What Causes “Camptocormia”?

From a muscular perspective, the paraspinal, hip and glute muscles are in a weakened state making it difficult for the body to “fight back” against the neurological side of Camptocormia which we will discuss later in this article.

The paraspinal muscles are located on the left and right side of your spine and are made up of three groups.

• Iliocostalis
• Longissimus
• Spinalis

Paraspinal muscles

The job of the paraspinal muscles is to extend your spine and to bend it over to the same side on which the contracting paraspinal muscle is located. For example: bending to the side to pick something off the floor.

The four main hip and glute muscles include:

• The gluteal group (butt muscles) – responsible for stabilizing the upper body and pelvis, aid in locomotion and extend the hip. Example: when your leg travels behind you before kicking a ball.
• The adductor group – responsible for pulling the thighs together and rotating the upper leg inward and stabilizing the hip. Example: When the leg moves to the center of the body after stepping out for a half-jumping jack..
• The lateral rotator group – responsible for rotating the hip joint laterally. Additionally this group will aid in extension and adduction of the hip. Example: Piriformis stretch also known as the “figure 4 stretch”
• The iliopsoas – this is the primary hip flexor and assists with external rotation of the hip joint. It plays an important role in correct posture for standing/sitting lumbar position and walking/running.

These muscle groups play a vital part in your activities of daily living! Bridges For Parkinson’s addresses these muscles groups with exercises such as:

• Sit to stands
• Squats
• Bridges/Bird dog/Seated Back Extension (with tubes)
• Clamshells
• ½ Warrior step
• Deadlifts
• Lunges (forward, reverse, lateral and diagonally)
• Rows
• T’s

And we progress the exercise to a higher level of difficulty by:

• Standing on one leg
• Adding repetitions or length of time
• Standing on the BOSU/Pad

Now, let’s discuss the neurological aspect of Camptocormia. Much like “Pisa Syndrome”, the root cause is multifactorial and largely unknown.

Camptocormia is largely considered a neurological disorder due to its comorbidity with other neurodegenerative and movement disorders such as ALS, dementia with Lewy Bodies, Alzheimer’s, and Parkinson’s (Srivanitchapoom & Hallett, 2016). As mentioned, although the presentation of this disorder is largely based on the forward lean, with a tendency to worsen throughout the day due to muscle fatigue, the causes are up for debate in research. For now, the best guess we can take is that the association with PD and other dystonias translates to a faulty cascade of events in the major movement centers of the brain, and the brain-body connection as consequence (Margraf et al., 2016).

Typically, you will find Camptocormia in the more advanced stages of PD, such as those living with Parkinson’s for 7 or more years, those with previous spinal issues, and those who indicate lower motor function on neurological exams (Srivanitchapoom & Hallett, 2016). However, even if you meet any/all of these criteria you won’t necessarily develop this disorder.

The onset of Camptocormia can be mitigated with proper preventative care such as exercise and physical/occupational therapy. Additionally, for individuals with this syndrome, botox and surgery (DBS) can alleviate the severe forward lean.

Botox may be used as a treatment that “freezes” the muscles affected in this disorder, allowing the muscles to lengthen, in turn helping to improve posture. However, this is neither a permanent nor strong solution, although it is seemingly effective in smaller studies assessing the benefits of this treatment (Bertram et al., 2015; Todo et al., 2018; Anandan et al., 2021) . There are also long term drawbacks, the biggest one being muscle weakness that can cause overall worsening of the disorder. There are other, more permanent ways of managing this as well, but are much more invasive. Spinal surgery and Deep Brain Stimulation are two of the more “common” options, although to be considered for these the symptoms must be severe (Margraf et al., 2016). The best ways to manage this disorder are to continue taking your prescribed medication, and exercise to strengthen the muscles involved with keeping your posture upright.

How Does Camptocormia Affect Activities of Daily Living?

Similar to Pisa syndrome, Camptocormia is a non-fixed flexion of the trunk, which can lead to significant deficits in posture, balance, safety, and ability to perform daily activities. Posture is one of the pivotal components for ALL ADLs. So, from an occupational therapy scope, restoration of posture and maintenance of current occupational performance is key.

ADL training: due to posture changes when standing, patients may experience difficulty maintaining routine activities with dressing, bathing. ADL retraining helps to maintain independence and current level of occupational performance.

Seating and positioning: in order to promote improved posture, position hips in an anterior angle, which can allow for increased participation in ADL’s such as feeding or grooming. This can also help with visual ability and increase social participation. Positioning during sleep is another potential area to examine as we do not want to encourage further postural deformity.

Visual strategies: due to the posture changes while standing, camptocormia can lead to difficulty interacting with our environment as we typically would, especially visually. Implementing visual cues or compensatory strategies can help promote improved posture and allow for safe interaction within their home or social environment.

Examples of Cues

1. Sit/stand with shoulders down and shoulder blades pinched together as if you are royalty. Automatically, people position their head over the shoulders and sit/stand taller.

2. Walk with eyes lifted and looking in the distance. When people look down they tend to bend over and slump their shoulders. Looking in the distance prepares them for what is ahead and trains them to use peripheral vision for what is right in front of them.

Home Modifications: modifying home and using assistive devices such as installing grab bars, removing trip hazards (rugs), training with reacher will ensure safety and promote ADL participation.

Energy conservation: as the day continues and the patient feels more fatigued, posture will be more difficult to maintain. Learning and implementing energy conservation techniques could help to promote improved posture throughout the day.

Supine exercises: Supine exercises (on your back) will help to maintain muscle strength and endurance while maintaining proper posture throughout range of motion. These exercises eliminate gravitational pull and forward flexion due to Camptocormia.

In closing, Camptocormia is unique in that it develops over time in conjunction with a movement disorder. The strength of your physical structure depends on having the knowledge to identify possible bone issues such as Camptocormia, properly addressing the issue with corrective exercises and a team that provides support and encouragement.

Bridges For Parkinson’s focuses on helping our fighters and care-partners develop a sense of awareness, provide corrective exercise therapy for those dealing with Camptocormia or preventative exercises to support a strong, vertical spine!

Fit Pros: You Can Improve the Lives of Those Living with Parkinson’s

Enroll in Colleen’s 12-hour online course, Parkinson’s Disease Fitness Specialist. The course brings the research, medical and fitness fields together so that fitness professionals gain a comprehensive understanding of Parkinson’s disease, and learn how to work with those who have it.

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Originally printed on bridgesforparkinsons.com. Reprinted with permission.

Written by:

• Colleen Bridges, M.Ed., NSCA-CPT, Parkinson’s Disease Fitness Specialist
• Renee Rouleau, PhD candidate, Jacobs School of Biomedical Sciences, University at Buffalo
• Betsy Lerner, ISSA-CPT, MA English and African American Lit, Parkinson’s Disease Specialist and Rock Steady Boxing Certified
• Cindy Nyquist, LPTA, ATC, Rock Steady Boxing Certified

References

• Anandan, C., & Jankovic, J. (2021). Botulinum Toxin in Movement Disorders: An Update. Toxins, 13(1), 42. MDPI AG. Retrieved from http://dx.doi.org/10.3390/toxins13010042
• Djaldetti R, Mosberg-Galili R, Sroka H, et al. Camptocormia (bent spine) in patients with Parkinson’s disease-characterization and possible pathogenesis of an unusual phenomenon. Mov Disord. 1999;14:443–7.
• Margraf NG, Wrede A, Deuschl G, Schulz-Schaeffer WJ. Pathophysiological Concepts and Treatment of Camptocormia. J Parkinsons Dis. 2016 Jun 16;6(3):485-501. doi: 10.3233/JPD-160836. PMID: 27314757; PMCID: PMC5008234.
• Schäbitz WR, Glatz K, Schuhan C, et al. Severe forward flexion of the trunk in Parkinson’s disease: focal myopathy of the paraspinal muscles mimickingcamptocormia. Mov Disord. 2003;18:408–14.
• Srivanitchapoom P, Hallett M. Camptocormia in Parkinson’s disease: definition, epidemiology, pathogenesis and treatment modalities. J Neurol Neurosurg Psychiatry. 2016 Jan;87(1):75-85. doi: 10.1136/jnnp-2014-310049. Epub 2015 Apr 20. PMID: 25896683; PMCID: PMC5582594.
• Todo, H., Yamasaki, H., Ogawa, G. et al. Injection of Onabotulinum Toxin A into the Bilateral External Oblique Muscle Attenuated Camptocormia: A Prospective Open-Label Study in Six Patients with Parkinson’s Disease. Neurol Ther 7, 365–371 (2018). https://doi.org/10.1007/s40120-018-0108-x
• Wartenberg R. Camptocormia. Arch Neurol Psychiatry. 1946;56:327.

If you work with people living with Parkinson’s disease then you’ve learned that every PD “fighter” experiences their own unique combinations of symptoms. Someone might have a tremor, hypophonia, and cognitive issues, while another struggles with rigidity, balance, vestibular issues and Pisa Syndrome. Wait. What is Pisa Syndrome?

Pisa Syndrome, also known as Pleurothotonus, affects the spine and is defined as a lateral bending of the trunk with a tendency to lean to one side.  Pisa causes changes in the spine such as narrowing of the central spinal canal through which the spinal cord travels leading to stenosis, poor posture and instability.

It is common for Pisa and Scoliosis to be considered the same problem. However, they are not. A person  living with Pisa will “list” to one side, while a person living with Scoliosis will have an S or C curvature to their spine and rotation but not necessarily a lateral bend.

What Causes Pisa Syndrome?

It is likely that Pisa is multifactorial, meaning many factors may influence the development of and severity of Pisa Syndrome. We think there is a central (brain and spinal cord) component to Pisa Syndrome involving basal ganglia dysfunction (dystonia and rigidity), abnormal sensory integration, and/or cognitive dysfunctions affecting perception and postural control. Additionally, there is dysfunction with the Peripheral mechanisms consisting of alterations of the musculoskeletal system (myopathy, soft tissue changes).

There is some conjecture that due to medication changes or the increase of the dose of dopaminergic medications, the likelihood of Pisa onset becomes higher. Do not make medication changes without discussing with your care team. Other scientists think that as basal ganglia dysfunction increases, so do the chances of Pisa (Tinazzi et al., 2019; Artusi et al., 2019).

Is Pisa Syndrome Neurological AND Bone-related?       

Yes! Because Pisa is associated with basal ganglia and sensorimotor dysfunction, there is a high likelihood of the onset of Pisa with various movement disorders, such as idiopathic Parkinson’s (80% of the Parkinson’s population) and atypical Parkinson’s syndromes (20% of the Parkinson’s population), such as Multiple Systems Atrophy, dementia with Lewy Bodies, Progressive Supranuclear Palsy (Castrioto et al, 2014; Barone et al., 2016).

Although Pisa syndrome is usually classified as a neuromuscular disorder, the spine is greatly affected due to favoring one side, leading to postural abnormalities. This can affect not only muscular health and movement, but also bone health. Bad posture, overcompensation for balance to one side, issues such as falling, and increased risk for osteoporosis may be more likely to occur in those individuals with Pisa, resulting in the likelihood of bone fractures and overall decreased bone health (Barone et al., 2016). 

Medication Awareness

Moving on, let’s investigate how medication may affect Pisa Syndrome. Although there are studies correlating the use of dopaminergic drugs, there is no longitudinal or concrete evidence stating that medication causes Pisa syndrome (Castrioto et al., 2014; Barone et al., 2016; Tinazzi et al., 2016). However, it is known that incorrect dosages, either too high OR too low, can affect the onset of this disorder (Castrioto et al., 2014; Tinazzi et al., 2016). Therefore, it is imperative that providers assess the correct dosage, and that medication is taken consistently  to lessen chances of this syndrome.

Some medications that may contribute to the onset of Pisa syndrome include dopaminergic medications such as carbidopa-levodopa (Sinemet or generic), dopamine agonists such as ropinirole, or anticholinesterases such as donepezil. This may sound scary, but it is important to note that Pisa can be treated by adjusting PD medications, so make sure to advise fighters to check in with their  doctor if they are experiencing Pisa symptoms.

The Effect of Pisa Syndrome On Parkinson’s Disease

Now that we’ve looked at Pisa from a scientific perspective, let’s address how Pisa Syndrome affects activities of daily living and Parkinson’s Disease.

As mentioned earlier, Pisa Syndrome essentially causes changes in the spine which leads to poor posture and instability and causes the following:

• The head may droop.
• The neck moves forward rather than remaining in alignment with the spine.
• The shoulders round causing a forward slump that affects the amount of space for your internal organs.
• Breathing becomes shallow and/or more labored.
• Movement through the hips and spine decreases which affects gait length and increases risk of falls.

The above postural changes can impact one in the following ways: 

• Neck/Jaw pain and headaches due to muscle tightness
• Loss of sleep
• Digestion disruption due to organs being compressed
• Depression
• Poor circulation
• Constricted nerves
• Foot pain due to misalignment
• High blood pressure

Sensory Components of Pisa

Here we see how the three balance systems are impaired:

• Vision: Impaired perception of vertical (vertical can deviate either towards or away from the side the body tilts).
• Proprioceptive: Unbalanced proprioceptive feedback (body awareness in relation to space and time).
• Vestibular: Unilateral or possible bilateral vestibular hypofunction.

Treatment for Pisa Syndrome

Let’s consider some of the activities a person does during the day-to-day – walking, bathing, dressing, cleaning, laundry, caring for children/spouse/pets, cooking, driving, social events.

We don’t have any concrete data on if/how Pisa affects Parkinson’s severity, but we can see from the above how it may affect Parkinson’s symptoms. So, how can we treat Pisa?  Let’s have a look. 

1. Medication – Advise fighters/care partners to speak to their physician. Encourage them to review their medications with their physician to see if changes in dosage or type of drug may be initiating or aggravating the syndrome.

2. Reducing Fall Risk – Pisa Syndrome can increase the risk of falls secondary to a lateral trunk lean which results in a change in the center of gravity and inadequate trunk control. As such, one should seek  a comprehensive evaluation aimed at eliminating risk factors for falls, improving postural awareness, strength/mobility training, and/or offering effective preventive measures to reduce fall risk. This can be performed by a multidisciplinary team consisting of a physician, personal trainer, and physical therapist.

Additionally, and importantly, a major goal of physical therapy is improving midline awareness and making sure that their curvature does not worsen.

3. Exercise – Addressing your fighters core through exercises that involve vertical and lateral challenges provide the most benefit.  While we cannot change the shape of the spine, we can strengthen the muscles that support the core!

• Rows
• T’s
• Front Lateral Pulldown
• Shrugs (standing upright)
• Modified Cobra (hands on the kitchen counter or ballet barre to protect those
• with Osteoporosis and Osteopenia)
• Tube rotation exercises
• Isometric tube exercises
• Stretching to maintain spinal mobility
• Trunk alignment and midline orientation exercises
• Physical Therapist to assess for somatosensory integration deficits which include:
  • Vision
  • Vestibular
  • Proprioceptive

*Below, you’ll find a video demonstration to learn how to properly perform these exercises. Bridges For Parkinson’s includes these exercises in the warm-up and strength portion of our routines each week.

Note: Some may need individualized physical therapy to provide postural exercises, reduce lumbar pain, and provide preventative exercises.

In closing, Pisa Syndrome is unique in that it develops over time in conjunction with a movement disorder. The strength of a person’s physical structure depends on having the knowledge to identify possible bone issues such as Pisa Syndrome, properly addressing the issue with corrective exercises and a team that provides support and encouragement.

Bridges For Parkinson’s is focused on helping Parkinson’s fighters, care partners and fitness professionals develop a sense of awareness and provide corrective exercise therapy for those dealing with Pisa Syndrome along with preventative exercises to support a strong, vertical spine!

Parkinson’s Disease is a journey and Bridges For Parkinson’s – Rock Steady Boxing Music City and Franklin wants to support you and your Parkinson’s “fighters” on the journey. As a MedFit author and Parkinson’s Fitness Professional, I am here to help.

Together, we fight back stronger!

Fit Pros: You Can Improve the Lives of Those Living with Parkinson’s

Enroll in Colleen’s 12-hour online course, Parkinson’s Disease Fitness Specialist. The course brings the research, medical and fitness fields together so that fitness professionals gain a comprehensive understanding of Parkinson’s disease, and learn how to work with those who have it.

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Written by

• Colleen Bridges, M. Ed., NSCA-CPT, Parkinson’s Disease Fitness Specialist, Founder of Bridges For Parkinson’s
• Renee Rouleau- PhD candidate, Jacobs School of Biomedical Sciences, University at Buffalo
• Betsy Lerner, MA English &  African American Lit., ISSA-CPT, Parkinson’s Disease Specialist and Rock Steady Boxing Certified
• Megan Kelly, PT, DPT, LSVT Big and Parkinson’s Wellness Recovery Certified
• Cindy Nyquist, LPTA, ATC, Rock Steady Boxing Certified

References

• Huh, Y. E., Kim, K., Chung, W.-H., Youn, J., Kim, S., & Cho, J. W. (2018). Pisa syndrome in parkinson’s disease: Pathogenic roles of verticality perception deficits. Scientific Reports, 8(1). https://doi.org/10.1038/s41598-018-20129-2
• Huh, Y. E., Seo, D.-W., Kim, K., Chung, W.-H., Kim, S., & Cho, J. W. (2022). Factors contributing to the severity and laterality of Pisa syndrome in parkinson’s disease. Frontiers in Aging Neuroscience, 13. https://doi.org/10.3389/fnagi.2021.716990
• Di Lazzaro, G., Schirinzi, T., Giambrone, M. P., Di Mauro, R., Palmieri, M. G., Rocchi, C., Tinazzi, M., Mercuri, N. B., Di Girolamo, S., & Pisani, A. (2018). Pisa syndrome in parkinson’s disease: Evidence for bilateral vestibulospinal dysfunction. Parkinson’s Disease, 2018, 1–6. https://doi.org/10.1155/2018/8673486
• Artusi CA, Montanaro E, Tuttobene S, Romagnolo A, Zibetti M and Lopiano L (2019) Pisa Syndrome in Parkinson’s Disease Is Associated With Specific Cognitive Alterations. Front. Neurol. 10:577. doi: 10.3389/fneur.2019.00577
• Barone P, Santangelo G, Amboni M, Pellecchia MT, Vitale C. Pisa syndrome in Parkinson’s disease and parkinsonism: clinical features, pathophysiology, and treatment. Lancet Neurol. 2016 Sep;15(10):1063-74. doi: 10.1016/S1474-4422(16)30173-9. Epub 2016 Aug 8. PMID: 27571158
• Castrioto, A., Piscicelli, C., Pérennou, D., Krack, P. and Debû, B. (2014), The pathogenesis of Pisa syndrome in Parkinson’s disease. Mov Disord., 29: 1100-1107. https://doi.org/10.1002/mds.25925
• Huh YE, Seo D-W, Kim K, Chung W-H, Kim S and Cho JW (2022) Factors Contributing to the Severity and Laterality of Pisa Syndrome in Parkinson’s Disease. Front. Aging Neurosci. 13:716990. doi: 10.3389/fnagi.2021.716990
• Tinazzi, M., Geroin, C., Gandolfi, M., Smania, N., Tamburin, S., Morgante, F. and Fasano, A. (2016), Pisa syndrome in Parkinson’s disease: An integrated approach from pathophysiology to management. Mov Disord., 31: 1785-1795. https://doi.org/10.1002/mds.26829
• Tinazzi, M., Gandolfi, M., Ceravolo, R., Capecci, M., Andrenelli, E., Ceravolo, M.G., Bonanni, L., Onofrj, M., Vitale, M., Catalan, M., Polverino, P., Bertolotti, C., Mazzucchi, S., Giannoni, S., Smania, N., Tamburin, S., Vacca, L., Stocchi, F., Radicati, F.G., Artusi, C.A., Zibetti, M., Lopiano, L., Fasano, A. and Geroin, C. (2019), Postural Abnormalities in Parkinson’s Disease: An Epidemiological and Clinical Multicenter Study. Mov Disord Clin Pract, 6: 576-585. https://doi.org/10.1002/mdc3.12810

Every 6 minutes someone is diagnosed with Parkinson’s Disease (PD). Most do not expect their physician to prescribe boxing along with dopamine replacement medication. Yet, every day movement disorder physicians, neurologists, and therapists (PT and OT) are doing just that with positive results, and quantifiable findings supported by years of in-depth research.  

Before we answer the question, “why boxing?” Let’s review the epidemiology of Parkinson’s Disease. Parkinson’s Disease is a progressive neurological disease and primarily affects dopamine producing neurons in the substantia nigra. The substantia nigra is a structure located in the midbrain, and plays an important role in how the brain controls movement. Substantia nigra is latin for “black substance,” reflecting the fact that parts of the substantia nigra appear darker than neighboring areas due to higher levels of neuromelanin in dopaminergic neurons.

People living with Parkinson’s Disease experience motor and non-motor symptoms such as, loss of balance, poor gait, postural issues, visual tracking problems, rigidity, tremor, freezing, facial masking, inability to focus on a task or process information clearly, bradykinesia, hypophonia (volume of voice), depression, anxiety, apathy. 

Now, consider the skills a boxer possesses. They train regularly to hone the following skills, skills that align with Parkinson’s symptoms.  

• STRENGTH
• HAND-EYE COORDINATION
• AGILITY
• SPEED
• MENTAL FOCUS
• BALANCE
• GAIT
• CARDIO ENDURANCE
• FLEXIBILITY

Therefore, it makes sense to include boxing in the regular exercise regimen of folks living with Parkinson’s. Additionally, when you integrate boxing with essential strength exercises that aid in bone health, you build a powerful, comprehensive exercise program that results in physical and cognitive growth and HOPE!

Can anyone with Parkinson’s Disease box? It depends on the person and their physical and cognitive imitations, but for the most part, the answer is yes! I work with those recently diagnosed and those fighting PD for over 27 years, ranging in age from 27-94! Some Parkinson’s “fighters” only have a slight finger tremor, while some are wheelchair bound. However, the one thing they have in common – the spirit to fight!

Now, the cherry on top of boxing for those living with Parkinson’s is the research that supports what we see each week in the gym. Rock Steady Boxing, a nationally recognized Parkinson’s fitness program located in Indianapolis, has been the focus of many research projects over the last 10 years to provide concrete supporting data.

1. Exercise is medicine! – Research by Johansson, Hanna et al reports that exercise is shown on a functional MRI (displays which areas of the brain are most active) to improve signal transmission in the PD brain, effectively demonstrating neuroprotection and neuroplastic changes related to exercise. 

• Neuroplasticity is the ability of the brain to form and reorganize synaptic connections, especially in response to learning, or experience, or following injury.
• Neuroprotection mechanisms and strategies employed to defend the central nervous system (CNS) against injury due to both acute (e.g. trauma or stroke) and chronic neurodegenerative disorders (Parkinson’s).

2. Improved Balance and Decrease Falls – In a national study conducted by Moore et al, shows an 87% reduction in falls of people participating in a Rock Steady Boxing program. 

3. Improved Non-Motor Symptoms

• 70% improvement in social life
• 62% improvement in fatigue
• 61% improvement in fear of falling
• 60% improvement in depression
• 58% improvement in anxiety

4. Decreased Risk Of Hospitalization – Kannarkat, T., et al report in their study “Effect of exercise and rehabilitation therapy on risk of hospitalization in Parkinson’s disease,” that participants in Rock Steady Boxing increase exercise duration and intensity which reduces the odds of a hospital visit in the PD population.

The above Information encourages many to join an independent Parkinson’s boxing program or a local Rock Steady Boxing.

It is important to note that while my program, Bridges for Parkinson’s, addresses the symptoms of Parkinson’s Disease with boxing, we also include Parkinson’s specific mobility, strength, fine motor, vocal, and cardio drills in each routine, along with love and support to keep “fighting back”. To quote a Rock Steady Boxing mantra,“ I promise you’ll feel better, but you’ll have to work for it and I’ll help you.”

Parkinson’s Disease is a journey and Bridges For Parkinson’s – Rock Steady Boxing Music City and Franklin want to support you and your Parkinson’s “fighters” on the journey. As a MedFit author and Parkinson’s Fitness Professional, I am here to help. You can contact me at info@bridgesforparkinsons.com for assistance!

Together, we fight back stronger!

Fit Pros: Learn The Skills You Need To Safely and Effectively Meet the Needs of the Clients With Parkinson’s Disease

Enroll in Colleen’s 12-hour online course, Parkinson’s Disease Fitness Specialist. The course brings the research, medical and fitness fields together so that fitness professionals gain a comprehensive understanding of Parkinson’s disease, and learn how to work with those who have it.

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Colleen Bridges has worked for nearly 17 years as an NSCA Certified personal trainer, group exercise instructor and fitness consultant and as an independent contractor for Nashville’s first personal training center, STEPS Fitness. Her passion for understanding the body in sickness and in health, and how it moves, as fed her interest in and enhanced her talent for working with senior adults, especially those living with a neurological disorder such as Parkinson’s Disease.

Determined, consistent and tenacious are just a few words I like to use to describe my Parkinson’s Disease “fighters”. I call them “fighters” because instead of lying down and giving up, they have chosen to take charge of their future. They commit to FIGHT BACK against Parkinson’s Disease, and that is a “fight” I want to join!

It is critical that you observe how the “fighter” moves, processes information and responds to challenges. We utilize that information and create fitness programs to address the motor symptoms those living with Parkinson’s Disease (PD) struggle with each and every day.

And the best place to start is with “Foundational Movements”  that will broaden a fighter’s Activities of Daily Living (ADL). People living with PD require a unique fitness program to address the impact that PD has on their ADLs.

Foundational Movements

Squats
Lunges
Hinge
Push
Pull
Carry
Rotation

I encourage Fitness Professionals to start with the most basic form of each Foundational Movement before progressing to a more challenging version. Neurologically, progressive and regressive movements make an impact on people living with PD. I have learned that repetition and exercise phases are a necessary part of any fitness program, similar to the human development process.

Consider how humans learn how to move from birth to 3 years of age. First, we learn a skill such as rolling over and we repeat it until we succeed. Then, we move on to unsupported sitting, followed by crawling until one day we are up and running!

And just in case you are wondering, the best place to start with foundational movements is in the warm-up. The repetition of the drills enables the fighters to improve their form, prepare for the work phase and create new neural patterns that will improve their functionality.

Let’s briefly discuss the movement patterns and how each movement can improve ADLs.

Squat

This movement pattern is used daily and assists in maintaining the ability to use synergistic muscular tension, stability and mobility through the torso, hips, knees and ankles. However, every fighter is different which means they will need to start at different levels.

EXERCISE	ADL
Seated knee extension	Toileting
Wall Squat	Showering
Squat	Dressing
Squat/stand and lift heels	Cleaning
Squat-jump	Care-giving

Lunge

Falling or the fear of falling is a significant issue for people living with Parkinson’s Disease.  The ability to stand on one leg, shift weight back and forth, maintain an asymmetrical split stance, bend down or get up off the floor is crucial for fall prevention. Lunging, in its various stages, provides Fitness Professionals a way to identify weak links.

NOTE: Some overlap will occur with the lunge and hinge movement.

EXERCISE	ADL
Tap one foot behind	Vacuuming
Reverse Lunge	Stepping in/out of shower
Step one foot forward	Tying shoelaces
Forward lunge	Walking up/down stairs

Hinge

We ALL need to strengthen our posterior chain but it seems to be the one area many Fitness Professionals shy away from including in their program. When you consider how many times a day someone bends over, they must have the strength and basic knowledge of how to hinge so they don’t fall or hurt themselves.

This is even more important for people living with Parkinson’s Disease. If they fall, it could take months for them to recover and by that time, the disease has progressed. Make it a goal to include a hinge movement in every routine.

EXERCISE	ADL
Basic Deadlift with arms crossed	Getting in/out of car
Supported Deadlift with one foot behind	Toileting/Showering
Traditional Deadlift with weights	Dressing
Single Leg Deadlift   Cross-over Deadlift	House and Pet Management

Push

The push-up is one the most popular exercises of all time! Mastering the “push” is a different challenge. The “push” (not always push-ups) requires core stability, upper back and shoulder strength. Once mastered, people living with PD will notice an increase in power and strength.

Word of caution: Parkinson’s Disease typically affects a person’s posture. Please remember that anything overhead will alter the center of gravity which means some fighters need to perform a “push” exercise that keeps the arms closer to the body.

EXERCISE	ADL
Wall Push-up	Rising from the floor
Push-up on Smith Machine Bar	House cleaning
Push-up on knees	Showering
Push-up on hands/toes	Pushing large door open

Pull

With so many postural issues due to weak muscles, developing a stronger “pull” will help people living with PD strengthen their back muscles which will decrease falls, improve posture and relieve back pain.

EXERCISE	ADL
Shoulder retraction only	Opening refrigerator
Shoulder retraction and hold	Vacuuming/sweeping
“Row” arms (no weights)	Showering
“Row” with tubes	Pulling up pants
“Row” with one arm	Picking a child or pet up

Carry

People living with PD want the ability to carry a grocery bag, walk and pull out keys all at the same time. But if they do not know how to use their body correctly, multitasking can be scary. Carry exercises focus on leverage and load. The good thing is we can always make adjustments depending on other variables. For example, bad shoulders mitigate against the overhead version of the carry while weak hands prevent one from carrying heavy loads. Carry exercises don’t necessarily help prevent falling other than the benefits they provide by strengthening the core. However, Fitness Professionals need to remember that carry exercises will serve your fighters in the early pre-kyphosis stage as a posture exercise. Carry exercises also provide a challenging asymmetrical exercise if performed unilaterally.

TIP: The carry movement is a great way to challenge the core without doing crunches!

However, before beginning a gait/carry movement with your fighters, make sure they have been thoroughly assessed.

EXERCISE	ADL
Walking	Carrying groceries
Bird dog walk	Carrying laundry basket
Farmer’s walk with two weights	Child care
Farmer’s walk with one weight	Pet Care
Farmer’s walk with one weight overhead	House Management

Rotation

The core maintains the stability and strength of the torso and acts as a conduit for energy. The movement patterns listed above encourage core strength which means rotational exercises are not so much a movement pattern as a powerful supplement to the above foundational movements.

Rotational exercises for people living with PD help improve gait and posture, reduce falls, improve coordination and mobility,  increase overall strength and, most importantly, enable them to independently perform ADLs.

Rotation Reminders for Fitness Professionals:

• Torso stabilizes the spine and allows movement by coordinating with the pelvic muscles.
• Flex, extend, bend and rotate
• Anti-Rotational Exercises best for beginners. People living with Parkinson’s DIsease often deal with Processing Information issues. Begin with basic exercises in order for fighters to learn proper form and technique.
• Muscles – Rectus Abdominis, obliques, rhomboids, deltoids, glutes, abductors, quads and adductors

Caution! Be sure to include the hips and the lower portion of the spine when rotating.

EXERCISE	ADL
Isometric tube hold	Enter/exit tub or shower
Isometric tube hold and step laterally	Enter/exit vehicle
Circles with tube	Emptying dishwasher
Circles with tube/squat	Laundry related activities
Torso rotation with tube	All ADL categories

In closing, when Fitness Professionals learn the art of organizing movement patterns and creating a program that uses these foundational movements, their fighters living with Parkinson’s Disease experience physical gains such as standing without support, joint mobility, active core stabilization, integrated joint action, cognitive improvement and most importantly the ability to handle a challenging moment with confidence.

Having acquired these foundational skills with the help of you, their Fitness Professional, build trust and credibility for supporting a fighter’s long-term commitment to HOPE. As noted at the beginning of this article, our fighters are determined, consistent and tenacious. They have chosen to take charge of their future and FIGHT BACK against Parkinson’s Disease — a “fight” I hope you, as a Fitness Professional, join!

Become a Parkinson’s Fitness Specialist

You can acquire the tools and resources necessary to integrate foundational movements with ADLs within the Parkinson’s community. Sign up for Colleen’s 12.5-hour online course on MedFit Classroom, Parkinson’s Disease Fitness Specialist.

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Colleen Bridges has worked for nearly 17 years as an NSCA Certified personal trainer, group exercise instructor and fitness consultant and as an independent contractor for Nashville’s first personal training center, STEPS Fitness. Her passion for understanding the body in sickness and in health, and how it moves, as fed her interest in and enhanced her talent for working with senior adults, especially those living with a neurological disorder such as Parkinson’s Disease.

Click to read part 1 of this article, covering background on facial masking, swallowing, vocal issues for people with PD.

As a fitness professional, you can help. The key is is knowing how to appropriately apply facial, swallowing and vocal projections drills to private and group sessions.  Below are some tips to utilize with your “fighters”.

Occupational Therapy Tips

Decreased facial expression

• Practice recognizing emotions in other people and creating appropriate responses. These responses may include facial expressions and verbal communication. Practicing these reactions to others can help support relationships. 
• The word, “affect” refers to the appearance of emotion through facial expressions, voice tone, and body language or gestures. If you have trouble with facial expressions, try to express yourself more through adding gestures or body language when you communicate.
• Communicate your situation! Try explaining your trouble with facial expressions and decreased voice volume to people who may not initially understand.
• Facial exercises: 
  • look in the mirror and practice your facial expressions.
  • hold a smile, raise your eyebrows as high as you can, bring your eyebrows together to frown,  open your mouth as wide to stretch your jaw, close your eyes tightly and open them wide, close your mouth and expand your cheeks, stick your tongue out and stretch it in each direction
  • Try to exaggerate your facial expressions and lip movements when you speak

Drooling

When eating:

• Try to maintain good posture
• Focus on keeping your chin up and lips closed when eating
• Swallow often to limit saliva
• Avoid sugary foods that create more saliva

Lip closure exercises:

• Close lips tightly for 5 seconds and release (5 times)
• Close lips around tongue depressor and hold while trying to pull from mouth for 5 seconds (5x)
• Fill your cheeks with air and move the air from cheek to cheek (5×5 times)

Dysphagia (Swallowing)

Transferring food from a utensil to the mouth, chewing the food then swallowing and most likely socializing all at the same time without any problems is a task most people take for granted.  According to Dr. Jose Vega MD, PhD, three phases must occur in order to swallow properly.

1. The Oral Phase: This phase begins when food is placed in the mouth and moistened with saliva. Moistened food is called a food bolus.
2. The Pharyngeal Phase: As the food bolus reaches the pharynx, special sensory nerves activate the involuntary phase of swallowing.
3. The Esophageal Phase: As food leaves the pharynx, it enters the esophagus, a tube-like muscular structure that leads food into the stomach due to its powerful coordinated muscular contractions. The passage of food through the esophagus during this phase requires the coordinated action of the vagus nerve, the glossopharyngeal nerve, and nerve fibers from the sympathetic nervous system.

Difficulty swallowing as it pertains to PD, reflects a deficiency of dopamine in the brain and often improves with medication and therapy/exercises. Drooling is also a symptom and is caused by reduced reflexive swallowing not from an overproduction of saliva but tends to improve with dopamine replacement therapy.  I have come to learn over the years that tremors and swallowing problems are usually the reason someone living with PD isolates themself.  It is embarrassing to finally get food on your utensil only to get it to your mouth and realize it has scattered all over the place or fear of aspiration which by the way may not always be heard. Aspiration can be quiet and lead to aspiration pneumonia, the leading cause of death in PD.

Care-partners and Fitness Professionals need to recognize the signs of aspiration as noted below. 

Coughing Before/After Swallowing

• Trouble chewing 
• Pocketing food inside the cheek
• Gagging during a meal
• Crying or face turning red while eating
• Drooling especially during meals
• Clearing the throat before/after and throughout the day
• Hoarse during and after the meal

For this reason, Coaches at Bridges For Parkinson’s offers popsicles to our “fighters” at the end of class. And they love it! They can have a fun treat without the fear of dropping food and visit with others so it is a win-win! Plus, it allows us to make sure they are hydrated. Sneaky, sneaky!

If a person living with Parkinson’s Disease or their care-partner is not sure whether their loved one has a swallowing issue, the Parkinson’s Foundation provides some great questions to help determine the answer:

• Have I recently lost weight without trying?
• Do I tend to avoid drinking liquids?
• Do I get the sensation of food being stuck in my throat?
• Do I drool?
• Is food collecting around my gum line?
• Do I cough or choke before, during or after eating or drinking?
• Do I often have heartburn or a sore throat?
• Do I have trouble keeping food or liquid in my mouth? 

ORAL EXERCISES to help with strengthening and coordinating the LIPS

1. Pucker up and blow a “oooo” then transition to an “EEEEEE” (SMILE BIG!)
2. “MMMM” press lips together as much as possible and take a deep breath in and hum..         good for the lungs too.
3. “Blowfish Hold” and hand isometrically pushes into cheek

TONGUE- ROM, Coordination and strength to help with eating and drinking

1. Stick tongue out as far as possible and hold it there (add SPOON FOR RESISTANCE)
2. Stick tongue out and up and hold (ADD SPOON FOR RESISTANCE)
3. Stick tongue into sides of cheek (helps with food deposits)
4. Roll tongue back and press against roof of mouth

In addition to swallowing exercises, meal prep aids in reducing issues brought on by dysphagia and may lower the risk of aspiration. The APDA Organization recommends the following nutritional information:

• Foods that don’t require vigorous chewing. Avoid dry and crumbly foods.
• Moderately textured wheat breads instead of very coarse, nutty breads or very soft, white breads.
• Oatmeal, cream of wheat or moistened dry cereals instead of coarse, dry cereals.
• Well-cooked, tender chicken/turkey, well-cooked fish without bones, chopped and ground meats, instead of stringy, tough meats that require a lot of chewing.
• Soft casseroles and poached or scrambled eggs
• Mashed potatoes or rice, moistened with gravy or margarine, instead of wild rice or French-fried potatoes.
• Soft, cooked pasta elbows, instead of long spaghetti.
• Soft, well-cooked vegetables, cut up or creamed, instead of raw vegetables or those with a hard texture.
• Pureed or mashed fruits, fruit juices and fruit sauces, instead of fruits with seeds or hard outer skins. Avoid nuts, seeds or coconut.
• Custard, yogurt, ice cream or other soft desserts

Speech

The article begins with a story of a grandmother experiencing dysphagia, hypomimia and hypophonia (softness of voice).  But people living with PD are not limited to hypophonia when it comes to speech problems.  Dysarthria and tachyphemia are additional speech issues people living with PD may experience.

Hypophonia or softness of voice is a condition that the Davis Phinney Foundation states 90% of people living with PD will experience. Characteristics of hypophonia include raspy voice, low speech volume, breathy and/or monotone speech.  

Dysarthria is another speech issue related to PD. It is characterized by poor articulation, respiration and/or phonation according to the National Aphasia Association.  Speech will come across as slurred, effortful and can often be mistaken for inebriated.  Doctors encourage people living with PD who are still driving to wear a bracelet to help law enforcement know they are not drunk.

Tachyphemia or acceleration of speech is also related to speech issues. A person struggling with tachyphemia will sound like all their words are jumbled together and often feel like their tongue is twisted.

While these issues are troublesome and frustrating, there are some easy and even fun ways to combat low volume, slurred and accelerated speech.  

1. Music Therapy – therapy defined broadly by the American Music Therapy Association as “a treatment including creating, singing, moving to, and/or listening to music [through which] clients’ abilities are strengthened and transferred to other areas of their lives.” All over the country, Parkinson’s Choirs are using singing to help improve respiration, Swallowing and enhanced volume and clarity of voice.
2. Breathing Drills- Strong lungs reduces risk of pneumonia and allows the person to complete ADL’s with little to no complications.  
3. LSVT LOUD: an effective speech treatment for people with Parkinson’s disease (PD) and other neurological conditions. A study on hypophonia in PD reviewed the effectiveness of LSVT treatment for those with idiopathic PD and found that voice loudness significantly improved. Goals include: increased voice volume, improved articulation, increased confidence with communication, and changes in neural function related to speech (https://n.neurology.org/content/60/3/432)
4. Speak Up For Parkinson’s App: Yes, an app with exercises that also provides visual feedback on volume.  

Exercises

1. Breathe in and exhale on a vowel for 5 seconds.
2. Hum for 3 seconds making sure to press the lips together then have the “fighter” say….
   Their favorite food or movie or color.
3. Hum for 3 seconds then say the vowels, sliding the voice from one vowel to the next.
4. Recite a poem with various emotions.
5. Partner “fighters” and have them share jokes with each other. Whoever laughs the hardest wins!
6. Close class or a session with a short song or team phrase . 

Fitness Professionals have the unique opportunity to incorporate exercises for the face, voice and swallowing while also performing strength and/or cardio exercises. You do not have to separate the two. It is a great way to challenge the cognitive aspects and  the physical, all while having fun! The best part is it creates a community moment which deepens their love and trust for you, the fitness professionals.  You are making a difference!’

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Co-authored by Colleen Bridges, M. Ed, NSCA-CPT; Renee Rouleau-B.S., PhD student, Jacobs School of Biomedical Sciences, University at Buffalo; Kristi Ramsey, OTD, OTR/L.

 

References

• ParkinsonsDisease.net (Emily Downward)
• Mayo Clinic
• https://neurologicalsurgery.in/top-facial-exercise-for-parkinsons-patient/
• https://www.mottchildren.org/health-library/hw81637
• https://www.urmc.rochester.edu/encyclopedia/content.aspx?contenttypeid=135&contentid=376
• https://n.neurology.org/content/60/3/432
• Ricciardi, L., De Angelis, A., Marsili, L., Faiman, I., Pradhan, P., Pereira, E. A., Edwards, M. J., Morgante, F., & Bologna, M. (2020). Hypomimia in Parkinson’s disease: an axial sign responsive to levodopa. European Journal of Neurology, 27(12), 2422-2429. https://doi.org/https://doi.org/10.1111/ene.14452
• Mäkinen, E., Joutsa, J., Jaakkola, E., Noponen, T., Johansson, J., Pitkonen, M., Levo, R., Mertsalmi, T., Scheperjans, F., & Kaasinen, V. (2019). Individual parkinsonian motor signs and striatal dopamine transporter deficiency: a study with [I-123]FP-CIT SPECT. Journal of neurology, 266(4), 826–834. https://doi.org/10.1007/s00415-019-09202-6
• Adrienne Wootton, Nicola J. Starkey & Carol C. Barber (2019) Unmoving and unmoved: experiences and consequences of impaired non-verbal expressivity in Parkinson’s patients and their spouses, Disability and Rehabilitation, 41:21, 2516-2527, DOI: 10.1080/09638288.2018.1471166
• National Institute of Diabetes and Digestive and Kidney Diseases. Your digestive system & how it works.
• Finsterer J, Grisold W. Disorders of the lower cranial nerves. J Neurosci Rural Pract. 2015;6(3):377-391. doi:10.4103/0976-3147.158768
• National Institute on Deafness and Other Communication Disorders. Dysphagia.

As a fitness professional, you can help. The key is is knowing how to appropriately apply facial, swallowing and vocal projections drills to private and group sessions. Below are some tips to utilize with your “fighters”.

It is important to respect professional boundaries and know when to refer a “fighter” to a neuro-opthamologist or an occupational therapist.  

Here are some simple and safe tips to share with your “fighters”…