Exercise as Medicine in Systemic Sclerosis
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Virtually every aspect of systemic sclerosis can be beneficially impacted by exercise: inflammation, circulation, body warmth, GI, skin, musculoskeletal and lung health. The therapeutic underpinnings of exercise target the specific mechanisms behind the pervasive SSc-disease biological, physical and psychological manifestations. This session is intended to empower people living with scleroderma with knowledge of systemic sclerosis and the anticipated impact exercise and physical activity can have on the many manifestations of systemic sclerosis. At the end of this session, attendees should have a better understanding of the extent of SSc and feel confident in constructing an exercise regimen generally and for their particular needs related to scleroderma.
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Exercise as Medicine in Systemic Sclerosis
- 1. EXERCISE is MEDICINE in Scleroderma: Vitality of Mind and Body Lesley Ann Saketkoo, MD, MPH New Orleans Scleroderma & Sarcoidosis Patient Care & Research Center University Medical Center – Comprehensive Pulmonary Hypertension Center & ILD Clinic Programs Louisiana State University & Tulane Schools of Medicine Scleroderma Foundation of Chicago Patient Conference 13 May 2023
- 2. WHAT IS YOUR RELATIONSHIP TO EXERCISE? What are some words you use to describe exercise? Recall a time you felt beautiful when exercising? Is there anything/s that comes between you and exercise? (perhaps top 3) Are there any particular fears you have about exercising?
- 3. Virtually all SSc manifestations benefit from exercise Exercise has general & targeted benefits in SSc Many types of exercise benefit in SSc All safe physical activity is modifiable & BENEFICIAL Physical activity Exercise: Stretch, Strength, Aerobic & Endurance You are your body connection GURU H a b i t u a t i o n : s e l f - k i n d n e s s & s u p p o r t OVERVIEW: EXPLORE THE POWER OF EXERCISE IN SSC
- 5. Common Experiences Among Patients with SSc – Major Reported Benefits • Improved blood circulation particularly in: • Hands • Feet • Prolonged core-warming • Breathing • Improved: • Breathing • Fatigue • Pain • Sleep • Vitality • Musculoskeletal function • Improves social confidence and body satisfaction Pettersson H,,et al.. Muscoskel Care 2020; Pettersson H, et al. Scand J Rheumatol, 2017
- 6. Physical Findings of People with SSc – just related to muscle.. • Reduced muscle strength • Reduced muscle endurance especially shoulder and hip flexion • Impaired mobility • Reduced cardiopulmonary reserve Pettersson H,,et al.. Muscoskel Care 2020; Pettersson H, et al. Scand J Rheumatol, 2017
- 7. Common Experiences Among Patients with SSc • Consistently expressed hopeful perceptions • “The more I exercise, the more improved my health and the chance to survive longer …. ” • Inactivity was consistently connected with further decline in health status: • “… because of my lung disease … I've been close to death a couple of times, so I notice a big difference between exercising and not exercising. • “It's as different as night and day” • However, despite perceiving exercise as essential for life and health • Patients also report not engaging in exercise • Multifactorial de-motivators include: • a) manifestation-related e.g., digital ulcers (DUs), joint pain, and restricted mobility • b) constitutional effects of disease e.g., pain and fatigue • c) psychosocial struggles of living with SSc • d) fear and lack of exercise safety knowledge • e) logistical burden of preparation and participation Pettersson H,,et al.. Muscoskel Care 2020; Pettersson H, et al. Scand J Rheumatol, 2017
- 8. Systemic Sclerosis 101 (for Stephanie)
- 9. Epidemiologic Factors of SSc Systemic sclerosis (SSc) rare, clinically heterogeneous, multi-system disease characterized by extensive fibrosis and vascular dysfunction involves the skin, lung, heart, and kidneys significant morbidity and mortality ~75,000 and 100,000 people in the United States are affected by SSc female to male incidence ratio ranges from 3:1 to 14:1 ages of 30 and 50 Much younger in African descent Up to 90% of patients with SSc develop some degree of ILD
- 10. SSc Classifications: Based on Distribution of Skin Involvement Limited Diffuse Diffuse Cutaneous (dcSSc) Proximal to elbows / knees Limited Cutaneous (lcSSc) Limited to Hands, forearms Feet Neck and Face Sine Scleroderma – no skin thickening ALL ASSOCIATED WITH SERIOUS DISEASE
- 12. Systemic Disease With Multi-organ Manifestations Skin thickening, itching, pain, pigmentation, calcinosis, digital ulcers Raynaud’s, telangiectasia, digital ulcers, calcinosis, PAH Cardiomyopathy, diastolic dysfunction, pericardial disease, arrhythmias Arthralgias, myopathy, tendon involvement, contractures, calcinosis, acro-osteolysis • Skin • Vascular • Renal • GI • Pulmonary • Cardiac • Musculoskeletal Pulmonary fibrosis, pulmonary arterial hypertensio Dismotility of esophagus, small bowel; pseudo- obstruction; malabsorption (bacterial overgrowth Renal crisis
- 13. SRC PAH GI PF Heart Multi-organ 1972- 1976 1977- 1981 1982- 1986 1987- 1991 1992- 1996 1997- 2001 Changing Patterns of Mortality in Scleroderma PAH p=0.05 GI p=0.43 Heart p=0.26 50 40 30 20 10 0 Year of death p<0.001(SRC) p<0.001 (PF) Frequency (%) Steen VD Ann Rheum Dis 2007;66:940–4. Walker U et EUSTAR. Ann Rheum Dis 2010;69:1809– 1815.
- 14. Increasing risk of permanent symptoms and disability Obliterative Vascular Injury & Progressive Fibrotic Damage Continued Inflammation ______________ INFLAMMATION __________________ DAMAGE / FIBROSIS __________________ ______________ TIME Healthy Functional Tissue Non- viable Fibrosis Systemic Treatment May Reverse Symptoms and Disability from Inflammatory Effects Symptoms May No Longer Be Treatable or Reversible with Systemic Treatment Lost Time = Lost Opportunity To Prevent Disability
- 15. Rodriguez Pla, Simms. Geographic Disparities in Systemic Sclerosis Mortality in the United States: 1999 to 2017. ACR 2019 Atlanta. Abstract 2917 Changing Patterns of Mortality in Scleroderma SSc Mortality progressively increased 1959 to 2002 SSc Mortality decreased 4.679/mil in 1999 to 2.993/mil in 2017 Linear regression significant negative slope, age-adjusted mortality rates over time (p < 0.0001) Overall: 3.962/mil African-Descent: 5.703/mil Native Americans /Alaskans: 5.047/mil
- 17. Bone Health Anti-inflammatory Gut Microbiome Muscle Contraction Induced Myogenic Mechanisms Facilitating Health Decreased adipose tissue-mediated inflammation MYOKINES Myostatin Angioneogenesis Vasculature Repair and Protection FSTL-1 Neuropsychiatric Protection Kynurenine Pathway Inhibition of apoptosis and decreased mitochondrial damage Harakiri TLR7 Kynurenine Adiponectin TNF-alpha MCP-1 Adiponectin IL-6 Decreased Insulin Resistance Adiponectin IL-6 TNF-alpha MCP-1 Irisin Irisin
- 19. MOVING THE BODY • A Conditioned Body manages physical symptoms better • Breathing • GI symptoms/digestion • Musculoskeletal • Increases Circulation • Decreases inflammation • Conditions nerves and glandular function throughout the body • Increasing healing biochemical interactions • Conditions and helps heals skin • Protects strengthens LUBRICATES JOINTS • Strengthens bone • Biochemical impact on brain & psychological function
- 21. Best Set of Lungs Body Posture Thorax Softening and strengthening of: back muscles Abdominal muscles Keeps vision forward/upward Lungs are better when body health, strength and ease Muscle Softening / Strengthening Joint Lubrication / Softening Ankles Hips Elbows Movement >> neuro-vascular networks
- 22. Everybody ASAP: Hand and Facial Exercise
- 23. Diaphragm – Alternate relaxation and contraction • Important muscle for • Breathing • Core strength • Balance • Back pain • Ribcage muscles /structures • Extrinsic massage of gut • Gut Motility • Parasympathetic aka soothing response • Nice heart massage • Show-n-Tell • D-health optimized singing and exercise
- 24. Brain <--> Gut Connection Microbiome Happy bugs >> Healthy person feed DIVERSITY Mindfulness Singing Moving the Body The Body in Motion Mindful Food Choices
- 25. Who Can Exercise? • SSc patients without pulmonary involvement • without restriction • SSc patient with cardiopulmonary involvement benefit • Considered feasible, safe, and effective regardless of underlying diagnosis (e.g., ILD and PH) • Screening: • Symptomatology (dizziness, chest problems, heart palpitations/fluttering) • Serial FVC - Serial DLCO • 6MWT for desaturation/oxygenation • Annual echocardiogram at rest and with exercise • SSc patients with mild pulmonary involvement • Safely able to engage in moderate aerobic intensity with moderate-load resistance exercises • SSc patients with myopathy and cardiopulmonary involvement • May warrant special attention focusing on strengthening
- 26. Oral Health Increased Salivation Wider Mouth Opening Improved Oral Health TMJ / Chewing / Nutrition Self-Image Muscle Strength and Endurance Joint stability/protection/postural alignment ROM Joint / body stiffness & lubrication Balance Bone Health Circulation Peripheral and Core Warmth RP/DU/Calcinosis Sexual Health Skin Function Wound Healing Aerobic capacity/ Cardiopulmonary Fitness Cardiac function Cardiovascular Pulmonary Vital Capacity Thoracic Shape Exercise Tolerance Dyspnea / Muscle Tiredness Overview of Potential Exercise Benefits in SSc in Males and Females GI FUNCTION Digestion Gastric-emptying (impacting GERD and regurgitation) Nausea, Bloating, Cramping, Constipation Microbiome Health Risk of GI Malignancy HRQoL Overall physical function Mental Health Stress Reduction Sleep Quality Fatigue Body Pain / Cramping / Other Pain Self-Esteem, Confidence Sexual Health Cognition Work Productivity Inflammation Reduction Systemic, muscle and joint Fibrosis Degradation of ECM Down-regulation of fibrosis pathways Immune Function Anti-infective Anti-carcinogenic Skin Function Sweating Skin Tightness Hand Function ROM Skin Tightness RP / DUs Foot and Ankle Health ROM and Joint Alignment Gait, Balance RP / DUs Diaphragmatic Strength Better Breathing Mechanics Stronger and More Flexible Core Balance GI Motility / health Sexual Function Male / Female
- 28. 5 Exercise Types in SSc it’s special like that… Special Aerobic (Circulatory/Cardiopulmonary) Strength / Resistance Stretching Balance!!!
- 29. PHYSICAL ACTIVITY: All planned and unplanned movement throughout the day EXERCISE: Planned repetitive engagement targeting improved health AEROBIC: Cardiopulmonary Fitness, Muscle Function RESISTANCE: Muscle Function, Bone Health STRETCHING: Muscle and Joint Health BALANCE Walking one’s dog Standing Vacuuming Gardening Tidying Up Making the bed Clearing the yard Walking to the train station Parking far from the shop entrance Mowing lawn Barriers to Physical Activity Pain / Discomfort Fatigue Disability prolongs activity completion time Fear of over-exertion Decreased fitness levels Reduced muscle strength Limited ROM Breathlessness GI/Bowel symptoms Depression Leisure time sports with children / grandchildren Leisure activities INTENSITY GRADES Low/Light: Similar intensity as at rest, requiring least effort, can chat comfortably Moderate: 50-70% of estimated maximal heart rate Somewhat short of breath, still able to keep a conversation High: >70% of estimated maximal heart rate Short of breath, able to say a few words but not converse Very high/Vigourous: >85% of estimated maximal heart rate, used in interval training, Very short of breath, often accompanied by profuse sweating Going up stairs Dancing
- 30. Movement (aka Exercise) every little bit you do is beautiful
- 31. Aerobic Exercise • Improve aerobic capacity • Cardiopulmonary fitness • Body’s circulatory density and health • 55%-90% of HRmax • 30 min 5 days/week INTENSITY GRADES Low/Light: Similar intensity as at rest, requiring least effort, can chat comfortably Moderate: 50-70% of estimated maximal heart rate Somewhat short of breath, still able to keep a conversation High: >70% of estimated maximal heart rate Short of breath, able to say a few words but not converse Very high/Vigourous: >85% of estimated maximal heart rate, used in interval training, Very short of breath, often accompanied by profuse sweating
- 32. Resistance for Strength & Endurance • Muscle strength • 60%-85% of 1 RM, higher resistance • For less repetitions • e.g. 8-12 repetitions, 2e4 sets. • Exercises should induce muscle fatigue but not exhaustion • 2-3 days/week • Muscle endurance • 30%-50% of 1RM , less resistance • For more repetitions • e.g. 15-25 repetitions with variable number of sets • 2-3 days/week Other ways .. Like some yoga or dance combine strength, endurance, aerobic, stretch..
- 33. Stretching • Naturally occurring phenomenon • Regulates muscle fiber length • Protect the muscle from excessive force • Improve range of motion and flexibility • Balance, orientation and muscular responsiveness. • Essential to maintain ROM • Increases blood flow and warmth to muscle/vessels • Can increase blood vessel numbers • Removes waste, alleviates stiffness • Warming the area prior with loose fluid movements, sauna, heat packs, or paraffin bath • Stretch to the point of resistance sensation • Held for 30-60 sec // NO BOUNCING!! • Synchronize with breath cycles • Allows muscle fibers to relax into optimal length • Approximately 10 min 2-3 days/week per ACSM • More targeting in SSc • Daily • Several times daily • Upon waking / Prior to sleep
- 34. Balance! Every day As often as possible … and scheduled.
- 35. KEEP MOVING Replace sedentary moments with any form and intensity of PA throughout the day. FOUR OVER-ARCHING G-FoRSS GUIDANCES on PHYSICAL ACTIVITY as MEDICINE AMP IT UP With improving fitness, increase PA intensity and/or duration to enhance health EXERCISE FOR LIFE Target overall health, circulatory function/repair, and systemic inflammation with planned pleasurable PA SSc CARE Additional exercises to target individuals’ specific SSc needs: Face / Mouth / Hands / Feet Myopathy / Lung etc. This includes adding small movements to everyday tasks (e.g foot flexing, heal raises, one-leg stands, sit- to stands, buttock contractions, stretching, singing and focused breath work etc) or adding tasks e.g. walking to paper bin or water fountain more frequently. Ideally, individuals cultivate a connection to exercise and a confidence to govern the progress and augmentation of their capacity. G-FoRSS strongly supports use of patient prioritization tools for self-monitoring progress. Aerobic movement >30 minutes (or any amount physically able), for 3-5 days/week at >moderate intensity Strengthening large muscle groups (e.g. weight-lifting, yoga,etc). >2 days/week Integrate exercise as a part of one’s ongoing life essentials. (Includes lung involvement) This realm of exercise is often under the therapist guidance. However training programs are available for patient home self- management (see resources). The frequency, duration and intensity may be dictated by an individual’s physical capacity e.g. or factors such as program phase e.g. more frequent during induction, and less frequent during maintenance phase. continuous sensibility during all exercise, with attention to modulate intensity, speed, force, and stretch to ensure safe, pleasurable exercise SAFETY:
- 37. Biophysical Impact of Exercise Thousands and thousands of Bejeweled Stars Sparkling Light Deep and Throughout the Body and Mind
- 38. You are Your Healing Sanctuary
- 39. Our Relationship with Exercise It’s a growing thing… in all sorts of ways.. it’s a growing thing..
- 40. Acquaintanceship with focusing attention on: 1. Body 2. Breath Allow your mind to rest on: 1 - in breath / out breath 2 – gentle sensation of breath in the body - sensation in belly (expansion, pressure, massage) - or sensation of breath in/out at tip of nose
- 41. ‘Mindfulness’: moment to moment nonjudgmental awareness / attention Continual Re-Engagement with PLEASURE Gentle, soothing pleasure of the breath sensation in the body
- 42. Attitudes: Friendliness to Body Protects the joint, creates alignment Listening to Body Sensations • Appreciating Body’s Conversation with Itself Habituating Friendliness • Cool Awareness: ‘airy’ spaciousness amongst & between – on the skin • Belly Friendliness: allows for soft, deep, comfortable integration & carriage of body - enjoy all belly contact sensations • Go Slow, Go Soft Soft pliable, easy joints • Ankles, knees, hip creases • Muscle tone carries impact, pleasure of the muscle
- 43. Urdhva Hastasana
- 44. Feet: Informational Intelligence and Power Dense neuronal networks, intense feedback of information to Body / Brain Sensory Input to the Brain / Spinal Cord Coordination Balance Important – all activities Important – in breathing Propels the body Body moves efficiently when feet are sensitive and strong Strong, sensitive feet support an open body and thorax Legs UP .. Returning Lymph > engergizing
- 45. 3-3-1 arms – legs – rising to stand
- 46. Habituation
- 47. Quick Overview for the Mind’s Eye Tendon attaches Muscle to Bone Ligaments connect Bone to Bone
- 48. Quick Overview for the Mind’s Eye Muscles converge on most joints in the body Muscle strength and mass protects the tendons, ligaments, alignment of the joints. Muscle contraction promotes chemicals for: Joint and ligament lubrication reduction of inflammation healthy bone and cartilage Safety of movement lies in the muscle!
- 49. Muscle is big in large swaths, small, long, tiny and intricate Muscle is layered outside, inside, in- between itself
- 50. Muscle is big in large swaths, small, long, tiny and intricate Muscle is layered outside, inside, in- between itself
- 51. Muscle is big in large swaths, small, long, tiny and intricate Muscle is layered outside, inside, in- between itself
- 52. Muscle is big in large swaths, small, long, tiny and intricate Muscle is layered outside, inside, in- between itself
- 54. Safety & Comfort
- 55. Incorporating Joyful Movement (aka exercise) in Daily Life Scheduled goal: work up to moderate intensity at least 30 min daily 5 days weekly Goal of 10 min or more per block Introduce Physical Activity wherever and as much as you can in the day Waking the body Body breaks START GENTLY ADDING TIME & INTENSITY
- 56. Habituation
- 57. Inner Guru Tracking Software • Noticing your feelings of frustration, disappointment, overwhelmed • Surrender to the sensual • Air on the skin • The pleasure of movement vibration on muscle – like a massage • Every movement is a healing offering for self and others • Allow your attention to flow on curiosity and be • Curiosity of sensation • Curiosity of the pleasure of different shapes • Guru = allowing the conversation your body has with itself to lead
- 59. Safety • Hydration • Warming up before general exercise • Warmth • Protection of fingers: gloves • Who can exercise • Getting out of wet clothes • Asking for assistance • Aquatic / Water Exercise
- 60. Breathlessness • Cardiopulmonary-related breathlessness • Neurophysiological, cognitive, and emotional distress • Different from other exertional breathlessness • Worry over breathlessness and thoughts of what it might mean • Can hinders exercise • Breathlessness and desaturation/ low oxygen • Distinct attributes often independent of each other • Desaturation is a chemical phenomenon • Breathlessness = complex multifactorial, multidimensional experience • Alone is not physiologically harmful • Being physically unfit causes breathlessness and fatigue • Exercise: • Treats lack of physical fitness • Causes breathlessness • Non-distressing manners • Diminish breathlessness over time
- 61. Dysfunctional Breathing Patterns • Breath Pattern Disorders • Rapid breathing / hyperventilating • Breath Holding • Divergence of breath and body sensation • Often times the thinking feels disconnected • Maybe higher risk of DB patterns • Neurophysiological overlay breathlessness sensations • Many People Experience • Can be caused by anxiety or rooted in memory • Can worsen anxiety • Exercise and Singing • Helps regulate breathing • Habituate more helpful breathing patterns • Strengthen diaphragm • Fortifies the positive sensation / connection of breath and body • Connecting breath and body
- 62. What about flaring, pain or after surgery? • You will find your way • Humming • Singing • Feet / Ankle Flexion and Extension • Morning Wake-up Exercises • Gentle balance exercises
- 63. Aquatic Therapy • Improvement • HRQoL Pain, Fatigue Muscle function, strength, and endurance, Aerobic capacity, Physical function, Range of motion, Stiffness Muscle spasm , Circulation, • Reduced disease activity in some Inflammatory diseases • Safety • Water properties minimize the risk of injury/re-injury • Buoyancy and immersion anti-gravity offloading effects provide protective measure • Good mode for balance and feet complications • Allows for many other adaptations and accommodations for exercise • Tolerability • Deceptively requires more force, effort, muscle activity • Bi-directional rapid temperature conduction • Increase ability to focus body movement • Stretching more tolerable with more extension • Increased exercise duration • Increased exercise intensity • Explore movement strategies and patterns against gravity without anxiety or fear of falling • Feels gooooood…
- 64. Aquatic Therapy • Rinse off chlorinated or salted water • Moisturize skin post-exercise • Exhaustion with changing of clothes and being wet at room air • Support / help provided or enlisted • Water is a rapid conductor of heat • Lower temperature water draws heat from the body • Water temperature between 30C-34C /86F- 93F • Protect against overexertion • Pacing • Gradual increase of duration and intensity
- 65. Massage.. What up, dawg? Possibly: • Stretch • Lymphatic • Skin softening; possibly in early on in diffuse disease • Stimulation / activation of muscle tissue • Self-massage >> strengthens and increases mobility of hands
- 66. You are Your Healing Sanctuary
- 67. Our Relationship with Exercise It’s a growing thing… in all sorts of ways.. it’s a growing thing..
- 68. Many Roads Strengthen Mindfulness Experience and Mindfulness Muscle Mindful Rigourous Movement • Yoga / Dance • Running • Weight Training • High Intensity Aerobics “The most precious gift we can offer anyone is our attention.” Thich Nhat Hahn Mindful Gentle Movement • Yoga • Walking • Dancing • Tai C’hi • Rehab Vibratory Sound • Singing • Chanting • Being in Presence of Musical Instrumentation • Percussive • Drawn • Wind Breath Sensation Experience • Self Exploration • Psychological fortitude • Choices and Motivation
- 69. Helpful Times to Incorporate Movement: Upon Waking – just like warming up • Circulate • Lubricate • Warm • Shift fluid • Early morning transition • Transform anxiety – by bringing focus out of mind and into body • Face, Hands/Wrist/Arms, Feet/Ankles/Legs, Head/Neck/Trunk • Enjoy the unfolding and pleasure of the movement • Fluid gentle movements • Gentle friction • Unfolding twists • Humming, gentle singing YouTube: Living Well: Heart, Lung, Muscle & Mind
- 70. Helpful Times to Incorporate Movement: Before Sleep • Similar to waking, gentle exercise at night • Shapes that provide counter stretch to the predominant movements of the day • Allow muscles and mind to release into a better sustained sleep, (good sleep, inflammation) • Habitually, signals the brain moving into sleep time/ safe time
- 71. So Much Joy, Pleasure, Relief and Comfort in Exercise • Singing / Humming / Chanting • Balance • Breath • Walking • Swimming • Tai Ch’I • Dance
- 72. • Singing / Humming / Chanting • Balance • Breath • Walking • Swimming • Tai Ch’I • Dance Indoor vs Outdoor • Safe comfortable environment • Phytochemicals • Nature – breeze, sound, scents – rekindles sensual connections
- 73. Singing - for Lung, GI and Physical Health • JUST SING!!! • What’s good for the lungs is good for the Gut • Sing while prepping a meal – cleaning up • Humming • A lot of Online Singing in UK - they welcome us! • Big push by British Lung Foundation based on growing evidence • Just join with link: • Delia RosenbOOm – Heart Song – Singing at Home • British Lung Foundation - Singing for Breathing Groups • Rachel Hynes - Scottish Opera / St. Andrews • Liv McLennan – Sing & Breathe
- 74. To Be or Not to Be ….. Alone Space to experience self, decompress, think Pursue activities one loves (read, paint…) With Loved Ones Partner Children, Siblings, Friends In Groups (Support, classes for interest / health) With Loved Ones in Formal Groups Outer Circle Societal Connection 76 Each Brings Its Own Important Value in Experiencing Self and Family
- 75. DO NOT UNDERESTIMATE THE POWER OF GROUP LOVE FOR HEALTH !!!
- 76. Humour, gentleness and patience Peace, Love & Puppy Dog Kisses
- 77. YouTube Fun • African dance • Walking classes • Body Groove • Do Yoga With Me .Com
- 78. Adjust Videos to YOUR SPEED
- 79. SaketkooMD or Saketkoo YouTube: Living Well: Heart, Lung, Muscle & Mind
- 80. …. For more from the G- FoRSS Team….
- 81. SSc Calcinosis Study & SSc Exercise Study • International Study • Inspired by patients • Either group interviews and /or an easy survey or two – to let us know how you have experienced living with your condition • Conducted remotely by survey or zoom livingwelllung@gmail.com
- 82. Thank You … and WELCOME ABOARD this fabulous journey ...of loving your body!!
Editor's Notes
- Fatigue is a part of most people’s lives intermittently – but it can be a pervasive part of life when living with a chronic illness – Increase one’s understanding of where fatigue arises from may help in our responses to fatigue in terms of reduction and packing The many exacerbators Maybe exploring fatigue beyond a disruptive disabler.. Maybe how to listen to fatigue as an informative friend – Perhaps recognizing what aspects we have control over and can make incrementally improve through habituation and pacing Habituating pleasure and contentment might help release the compounded layers of psychological and emotional crud that worsen give biologically arisen fatigue more weight THANK YOU Embodiemnt>>> Ease in moment, of movement .. Cultivating a home within one’s self
- Most of us have barriers : aversion, stigma, other pressing obligations that we chose over movement, Write one or a few words about that time
- There is so much to talk about and has been painful to select By the end of this RECOGNISE the power of exercise in SSc /DEVELOP a SENSITIVITY INTERUPTING INFLAMMATION and FIBROTIC pathways / CIRCULATION / and CARDIOVASCULAR HEALTLH IMPORTANT IN ssC Overall strategies like pacing, steady exercise, nutrition, SLEEP, self-advocacy through sarcoidosis knowledge Regardless of organ system
- GOAL of SLIDE: to transition the presentation focus to group structures and the people in them, and roles
- IF you can reflect , you begin to notice and recognize what is going on for you .. And the possibilities of modification 3 -3 – 1 Kundalini spinal series
- Bring up surgery – transplant -
- Bring up surgery – transplant -
- Bring up surgery – transplant -
- GOAL of SLIDE: to galvanise thought around the single prevailing concept - Speak about many things ..special impact on connective tissue disease - But it will always come back to this – every little movement we do is beneficial
- Medsger T. In Clements PJ and Furst DE, eds. Systemic Sclerosis. 2nd ed. Philadelphia, PA: Lippincott Williams & Wilkins; 2004. The type of scleroderma, limited versus diffuse, is defined by the extent of skin involvement. If the skin involvement is restricted to areas below the elbows and below the knees, the patient is classified as limited cutaneous systemic sclerosis. If skin proximal to the elbows and knees (for example, the chest wall and thighs) is involved, then the patient is classified as diffuse cutaneous systemic sclerosis. Overlap syndromes are common. This occurs when patients with either form of SSc have features of SLE, RA, or inflammatory myositis. Undifferentiated connective tissue disease refers to a patient in whom there are not enough findings or features to fulfill diagnostic criteria for a particular CTD.
- Clinical manifestations develop in a genetically predisposed host that encounters probably serial triggers Vascular injury > immune-mediated inflammation and fibrosis Endothelial dysfunction and disrepair Aberrant lymphocytic and fibroblastic activity Vascular injury > cascade of inflammatory events leading to vascular knock-out and fibrosis creating the very wide spectrum of difficult to treat manifestations These processes are essential concepts to understand : The natural history of SSc is REVERSIBLE disease becomes IRREVERSIBLE damage untreated disease activity results in progressive irreversible fibrosis – MAKING early diagnosis and early implementation of appropriate treatment essential
- Esophageal disease is most common visceral manifestation, but lung disease is the leading cause of death in SSc. GI = gastrointestinal
- Renal crisis used to be a dominant cause of death in patients with SSc. With the advent of ACE inhibitors, survival is much improved. Prof. Steen and Medsger’s sentinal work in Mortality Trends have taught us that over the past 30 years ILD and PAH (ILD 1st) have transposed SRC as most common causes of death in SSc; d/t better understanding and mangement of SRC. Uli Walker et EUSTAR suported this in 2004 - 2011 w/ cohort of 5860 pts w SSc of 284 fatalities 35% of death attributable to PF. On the other hand, lung complications resulting in death have been on the rise, such that PAH and PF are now by far the leading cause of mortality in patients with SSc, accounting for about half of deaths in patients with SSc. ACE = angiotensin-converting enzyme PF = pulmonary fibrosis SRC = scleroderma renal crisis Steen VD. Ann Rheum Dis. 2007;66:940-944.
- Background/Purpose: Population mortality studies in the United States have previously reported a progressive increase in the scleroderma (SSc) mortality rates from 1959 to 2002. Identification of areas with clusters of higher mortality rates is important to implement targeted interventions and may provide clues about possible etiology factors, especially environmental. In this study, we aimed to estimate the mortality rates of patients with SSc and to determine whether there is a geographic variability in scleroderma mortality rates at the state level in the United States using publicly available data from 1999 to 2017. Methods: To obtain mortality rates of scleroderma as the underlying cause of death, we used the CDC Wonder Underlying Cause of Death database and its query system, which contains data from 1999 to 2017. We used the corresponding ICD-10 codes for SSc for the queries. Age-adjusted rates were calculated by state and demographics, including, gender, race, and Hispanic ethnicity. Mortality rates were given as number of deaths per million. A linear regression model was applied to evaluate trends over time. Results: During the 19-year period of our study, a total of 24,525 deaths had SSc as the underlying cause of death of an underlying population of 5,761,465,567. The age-adjusted mortality rate was 3.962 per million (95% CI: 3.912-4.012). The SSc-related mortality rates have progressively decreased from a rate of 4.679 (95%CI: 4.423 - 4.934) in 1999 to 2.993 (95% CI: 2.817 - 3.170) per million in 2017. Linear regression found a significant negative slope, indicating a trend to the decrease of age-adjusted mortality rates over time (Age-adjusted rate = - 0.1015*year + 207.8; p < 0.0001) (Figure 1). There were more deaths in females than in males with a ratio: 4.1 to 1. The age-adjusted mortality rate was 5.885 (95% CI: 5.802 - 5.967) per million in females and 1.651 (95% CI: 1.604 - 1.698) per million in males. The highest age-adjusted mortality rate was in Blacks or African-Americans, at 5.703 per million (95% CI: 5.521 - 5.885), followed by American Indians or Alaska Native at 5.047 per million (95% CI: 4.428 - 5.667) (Table 1). Clusters of contiguous states with higher and lower mortality rates were identified. South Dakota was the state with the highest whereas Hawaii was the one with the lowest mortality rate. In Table 2, we list the states with the highest mortality rates. Conclusion: Our study found a trend towards a decrease of mortality rate in SSc compared to previous studies, and a trend to a progressive decrease in mortality rates during the years of our study. In addition, we found relevant state-by-state variation in mortality with several geographical clusters with higher mortality rates. Further analyses of those geographical clusters are warranted in order to better understand the factors associated to the observed geographic disparities and to implement targeted interventions to decrease disparities.
- GOAL of SLIDE: to galvanise thought around the single prevailing concept - Speak about many things ..special impact on connective tissue disease - But it will always come back to this – every little movement we do is beneficial
- And muscles are everywhere: face, around eyes, in the hands and feet, our tongue, big big diaphragm.. The more muscle mass we acquire which may really be muscle density with the same volume – the more availability yand productivity of these muscle tonics we are likely to produce Boehler JF, Horn A, Novak JS, et al. Mitochondrial dysfunction and role of harakiri in the pathogenesis of myositis. J Pathol. 2019;249(2):215-226. doi:10.1002/path.5309 Suriano F, Van Hul M, Cani PD. Gut microbiota and regulation of myokine-adipokine function. Curr Opin Pharmacol. 2020;52:9-17. doi:10.1016/j.coph.2020.03.006 Sakurai T, Ogasawara J, Kizaki T, et al. The effects of exercise training on obesity-induced dysregulated expression of adipokines in white adipose tissue. Int J Endocrinol. 2013;2013:801743. doi:10.1155/2013/801743
- Multi-disciplinary Gathered together – multiple meetings , reviewing and synthesizing evidence as relates to: Our first tasks were to take what we know about scleroderma and exercise and investigate some more Our next task was to dive deeply into the literature of other CTDs and exercise Dive deeply into the evidence on anti-inflammatory and anti-fibrotic disease modification, biological repair of circulatory/vascular and other tissue as relates to exercise The broke down SSc into its many manifestations reviewed and synthesized evidence of exercise effects in non-SSc populations From this groups prior research in myositis.. We know muscle was a major player in down-regulating inflammation and potentially interrupting fibrotic pathways.. But our investigations continued to amaze us with muscle what we’ve come to recognize as an amazing ORGAN that orchestrates and supports activity of virtually every other system of the body – including brain, GI tract, microbiome regulation, immune health, The poor publisher – was overwhelmed by the hundreds of necessary references – Yes this is a scientific article to spur other researchers to investigate the powerful treatment modality in SSc – but it was also written for patients as an empowerment and comfort tool.
- GENERAL exercise diffuse health Nervies including GI tract Say up front before we get into the detail of food tolerance…. Though not expressly intuitive, exercise impacts GI function and symptoms by multi-modal mechanisms . Mouth exercise and physical activity have been tied to improved salivation and oral health and function(kim,lee ). Even minor physical activity alone such as walking stimulates digestion, reduces nausea and promotes motility. Physical activity of varying types and intensity are linked with decreasing digestive system cancers, decreasing pro-inflammatory gut microbiota and gut restoration of microbiota associated with favourable effects on cognition and mental health(microbiome ). Microbiome restoration could be a key influencer of lower GI health(x ) as dysbiosis appears to be a feature of the SSc disease state(REF ). Exercise, singing and their rhythmic breathing exert mechanical influences but also cultivate parasympathetic conditioning that helps support improved gastrointestinal function to increase motility, reduce nausea, bloating and constipation. In exercise, the lungs are aerated as the large muscle of the diaphragm draws downward for chest expansion, exerting pronounced intra-abdominal pressure differentials and direct mechanical pressure that massage and stimulate the abdominal organs and neurohormonal networks involved in GI motility. Particularly for patients uncomfortable travelling due to diarrhoea or faecal soilage, telehealth platforms allow participation in activities at home. SALIVATION Kim HJ, Lee JY, Lee ES, Jung HJ, Ahn HJ, Jung HI, Kim BI. Simple oral exercise with chewing gum for improving oral function in older adults. Aging Clin Exp Res. 2020 May 31. Lee KH, Jung ES, Choi YY. Effects of lingual exercises on oral muscle strength and salivary flow rate in elderly adults: a randomized clinical trial. Geriatr Gerontol Int. 2020 Jul;20(7):697-703. MICROBIOME Huang J, Liao J, Fang Y, Deng H, Yin H, Shen B, Hu M. Six-Week Exercise Training With Dietary Restriction Improves Central Hemodynamics Associated With Altered Gut Microbiota in Adolescents With Obesity. Front Endocrinol (Lausanne). 2020 Dec 7;11:569085. Zhong F, Wen X, Yang M, Lai HY, Momma H, Cheng L, Sun X, Nagatomi R, Huang C. Effect of an 8-week Exercise Training on Gut Microbiota in Physically Inactive Older Women. Int J Sports Med. 2020 Dec 15. Barber TM, Kyrou I, Randeva HS, Weickert MO. Mechanisms of Insulin Resistance at the Crossroad of Obesity with Associated Metabolic Abnormalities and Cognitive Dysfunction. Int J Mol Sci. 2021 Jan 7;22(2):E546. Kim HJ, Lee JY, Lee ES, Jung HJ, Ahn HJ, Jung HI, Kim BI. Simple oral exercise with chewing gum for improving oral function in older adults. Aging Clin Exp Res. 2020 May 31. Lee KH, Jung ES, Choi YY. Effects of lingual exercises on oral muscle strength and salivary flow rate in elderly adults: a randomized clinical trial. Geriatr Gerontol Int. 2020 Jul;20(7):697-703. Monda V, Villano I, Messina A, Valenzano A, Esposito T, Moscatelli F, Viggiano A, Cibelli G, Chieffi S, Monda M, Messina G. Exercise Modifies the Gut Microbiota with Positive Health Effects. Oxid Med Cell Longev. 2017;2017:3831972. Fretheim H, Chung BK, Didriksen H, Bækkevold ES, Midtvedt Ø, Brunborg C, Holm K, Valeur J, Tennøe AH, Garen T, Midtvedt T, Trøseid M, Zarè H, Lund MB, Hov JR, Lundin KEA, Molberg Ø, Hoffmann-Vold AM. Fecal microbiota transplantation in systemic sclerosis: A double-blind, placebo-controlled randomized pilot trial. PLoS One. 2020 May 21;15(5):e0232739. Natalello G, Bosello SL, Paroni Sterbini F, Posteraro B, De Lorenzis E, Canestrari GB, Gigante L, Verardi L, Ferraccioli G, Sanguinetti M, Gremese E. Gut microbiota analysis in systemic sclerosis according to disease characteristics and nutritional status. Clin Exp Rheumatol. 2020 May-Jun;38 Suppl 125(3):73-84. Volkmann ER, Chang Y-L, Barroso N, et al. Association of systemic sclerosis with a unique colonic microbial consortium. Arthritis and Rheumatology 2016;68:1483-92. Volkmann ER, Hoffmann-Vold A-M, Chang Y-L, et al. Systemic sclerosis is associated with specific alterations in gastrointestinal microbiota in two independent cohorts. BMJ Gastroenterology 2017;4:e000134. Volkmann ER, Hoffmann-Vold A-M. Gastrointestinal tract microbiota modifications in systemic sclerosis. Eur J Rheumatology 2020;7:S228-S236.
- EARLY REFERRAL TO OT and PT
- NOT JUST A MUSLCE OF BREATHING Where attaches to spine.. Has full on influence throught the thorax
- Sometimes called brain gut axis Many Microbiome are the organsims in our body that we live with convivially / commensurately On our skin, other organs and GI tract.. The bugs we have in the Gi tract appear to be very important in relation to immune , brain function and mental health
- Sweating imporptant for skin health and conditioning…. Sweting carries away and sipactch toxins such as… inflammatory cytokines… Right side 2nd line.. Increased salivation – move to above Ask patient partners about mannequin – too young, other ideas? Ok? Muscle
- Not an ultimate replacement – at least not yet – for essential systemic therapies like MMF or RTX For peace and harmony of the body and of the mind; it’s easy for us as humans to decompensate into over-doing it, and then beating ourselves up because we didn’t exercise enough – or be hard on ourselves because our systemic therapy may need to be advanced – that mentality ultimately puts a wedge between our self our body and our mind.. And makes us MISERABLE .. If not feeling the pleasure – if getting hard on yourself.. find a way back to the beauty and moderation of engagment Instead … HAVE I CONNECTED WITH THE PLEASURE AND FREINDSHIP MY BODY BRINGS ME?
- GOAL of SLIDE: to transition the presentation focus to group structures and the people in them, and roles
- Per ACSM
- Per ACSM
- We are going to see this again later
- waking up the next day and grabbing the bull by the horns – to ‘change your life and habits’.. Not realistic .? Shock to body? Lasting change may come in by slow introduction … looking at what’s in your world around you to make life easier .. To what you like and could introduce more of NOTHING IS A ONE OFF MIRACLE Self-regulation is not policing – they are positive cultivated habits that we can learn to incorporate or fall back on whethr intentional or because over time they are there for us I na immedicate sense it is an element self-soothing as we hope babies learn to do – being aware, using achors that soothe and support onesefle
- SOFTEN THE MIND TO BE MORE RECEPTIVE TO POSSIBILITY AND SOOTHING EFFECTS OF BODY AND BREATH TO ALLOW STRESS TO BE LESS EDGY At any given moment, you are your healing sanctuary.. it’s YOU Your healing sanctuary can be summoned at any moment in the throes of your day. To guide you to your well of nourishment and calm reassurance .. Where you will find the most essential answers to your questions.. Where your deepest wisdom lies..
- SIMPLE – FOUNDATIONAL – connection to sensation of breath Natural breath in , natural breath out The physcial sensation this causes in your body.. This is something I easily – just like now teach my patients
- NOTICE AVERSION / disappointment / frustration Smile – allow your attention to soften to yourself Use breath as an anchor suggest a This is a PRACTICE – there is NO PERFECTION two-component model of mindfulness, where the first component is the regulation of attention in order to maintain it on the immediate experience, and the second component involves approaching one’s experiences with an orientation of curiosity, openness, and acceptance, regardless of their valence and desirability. Mindfulness is typically cultivated in formal meditation practices, such as sitting meditation, walking meditation, or mindful movements (Kabat-Zinn, 1990). The practice of mindfulness meditation encompasses focusing attention on the experience of thoughts, emotions, and body sensations, simply observing them as they arise and pass away.
- Upward arms…. Sitting , standing … lying down is beautiful INTERCOSTAL MUSCLES…. With no props Or take a cushion… lying down is awesome… can go to the point where you feel something in the muscle…. And enjoy the breath pulsating there .. To whatever position you find yourself in
- 3 -3 – 1 Kundalini spinal series
- 3 -3 – 1 Kundalini spinal series
- Didn’t want ot illustrate with the knee .. But it provides an example that hits home with many folk Can see the joint alone is DELICATE … and the long and short term safety of joints rely on MUSCLE and the RELATIONSHIP we HAVE with MUSCLE
- Small muscles important Cultivating the inter-relationships and senstiation of these muscles occur with practiced mindful pleasurable exercise – they are inter-reliant.. We’ll talk more about postural importance in SSc
- Small muscles important Cultivating the inter-relationships and senstiation of these muscles occur with practiced mindful pleasurable exercise – they are inter-reliant.. We’ll talk more about postural importance in SSc
- Small muscles important Cultivating the inter-relationships and senstiation of these muscles occur with practiced mindful pleasurable exercise – they are inter-reliant.. We’ll talk more about postural importance in SSc
- In addition to scheduled exercise 5 days a week
- Guru – hand on shoulder - never alone.. You have your self – one step , 2nd step .. Don’t think .. Just do… because a mind experiencing dep/anx can talk us out of everything Big problem taking time for self – when there is so much need outside of ourselves : family, the world… we are better able to meet those needs when we do good for our selves… may others who feel discomfort or stress .. Or the earth find relief, comfort…. etc
- waking up the next day and grabbing the bull by the horns – to ‘change your life and habits’.. Not realistic .? Shock to body? Lasting change may come in by slow introduction … looking at what’s in your world around you to make life easier .. To what you like and could introduce more of NOTHING IS A ONE OFF MIRACLE Self-regulation is not policing – they are positive cultivated habits that we can learn to incorporate or fall back on whethr intentional or because over time they are there for us I na immedicate sense it is an element self-soothing as we hope babies learn to do – being aware, using achors that soothe and support onesefle
- SOFTEN THE MIND TO BE MORE RECEPTIVE TO POSSIBILITY AND SOOTHING EFFECTS OF BODY AND BREATH TO ALLOW STRESS TO BE LESS EDGY At any given moment, you are your healing sanctuary.. it’s YOU Your healing sanctuary can be summoned at any moment in the throes of your day. To guide you to your well of nourishment and calm reassurance .. Where you will find the most essential answers to your questions.. Where your deepest wisdom lies..
- Well-studied Cancer, Chronic Illness, Childbirth, Trauma, ADHD Weight loss, Smoking, Addiction With NON –JUDgemental attention – riding gently on the sensation of pleasurre >> safe, effective, enhanced performance overtime
- What’s good for lungs is good for GI ! Phytochemicals – Japanese paving the way for this research
- What’s good for lungs is good for GI ! Phytochemicals – Japanese paving the way for this research
- So much literature coming out of Britain Google any of the above
- Building these structures into our lives Having several to select from Building a habit of knowing what’s going on in terms of activities
- Online Movement Support groups Webinars by the SF, SRF, SC
- One of the most important elements I try to impart to students… is self-friendliness. There is enough adversity out there.. unnecessary stress and misery is unlikely to make us happier in any run.. I hope our time together has been meaningful to you – even a small amount of how meaningful our time together was for me.
- To follow along with workshops, classes etc along the lines of this workshop….
- GOAL of SLIDE: to let folks know , that we will spend more time explaining Phase I It will be egood to mention that after Phase I, we’ll have a training on Phase II
- Lori Portka Artist Use words… to alleviate/prevent pain…. Promote lung capacity