Lifestyle For Health: Adult Concerns

1. Lifestyle For Health: Adult Concerns

2. Health Care for Adults with Spina Bifida Mark Merkens, M.D. Associate Professor of Pediatrics Director - Spina Bifida Program Oregon Health & Science University Portland, Oregon Thomas S. Webb, MD, MSc Asst. Professor of Clinical Medicine and Pediatrics Cincinnati Children's Hospital Cincinnati, Ohio

3. Adults with Spina Bifida are Pioneers • Very little research or reports on the care of adults. • Not many clinics for adults with Spina bifida.

4. Objectives • Discuss health care issues of adults with spina bifida. • Discuss health care skills. • Discuss ways to promote healthy living. • Discuss Personal Health Care Record.

5. Changes in your Body • Changes can occur in all the body systems. • Some are directly due to Spina Bifida. • Some are caused by lifestyle choices. • Some are due to aging.

6. NORMAL AGING • Muscular • Decreased strength, endurance, flexibility. • Nervous system • Deceased sensation, balance, cognitive. • Skeletal • Arthritis, osteoporosis, contractures. • Cardiovascular • Decreased cardiac output • Vascular changes.

7. NORMAL AGING • Skin • Thinning, less elastic. • Metabolism • Slows, tendency to gain weight. • Continence • Pain • Musculoskeletal, nerve compression or damage. • Mental Health • Limited horizons, future. • Vascular changes of aging.

8. Aging in Spina Bifida • Uneven pressure on joints. • Earlier arthritis and pain. • Diminished muscle strength & endurance. • Decreased ambulation, mobility, transfers. • Diminished nerve function. • Decreased sensation. • Decline in circulation in legs & feet.

9. Aging in Spina Bifida • Decreased skin tone. • Increased risk of decubitus ulcers, abrasions. • Osteoporosis in higher level Spina Bifida from lack of bone stimulation from walking. • Risks of recurrent fractures. • Obesity • From decreased mobility. • Causes decreased mobility.

10. Shunt Failure Chiari Compression Tethered Cord Urinary Bowel Orthopedics Skin Heart and lung Obesity Exercise Sexuality Pain Mental Health Hypertension (high blood pressure) Aging Health Care Problems

11. Shunt Failure • Even if the shunt has “not been working” for years. • Trauma • Same symptoms • Adult neurosurgeons may not think or believe it. • Any neurological problem: • “It’s the shunt, stupid.”

12. Chiari-II Brainstem Compression • Likely to affect apnea and respiratory drive. • Might be increasingly frequent pneumonias. • Chronic oxygen requirement, asleep, then continuous. • Less likely to be primary event. • More likely to be recurrence. • “It’s the shunt, stupid!”

13. Tethered Spinal Cord • What is it? • Spinal cord can’t move freely because scar tissue, small cysts or fatty growths. • Tethered means “attached or bound together” • You can develop a tethered spinal cord again.

14. Tethered Cord: Signs & Symptoms • Change in urinary pattern • Change in bowel pattern • Increased trouble walking • Pain in the back, neck, leg • Change in muscle tone of the lower legs • Change in sensory level • New / persistent decubitus ulcers • You develop new or worsening scoliosis (curvature of the spine)

15. Spinal Cord Tethering • Adult providers may not know or think of it. • A literature report of a 72 year old ambulatory person, lost ambulation. • Less likely to be primary event. • More likely to be recurrence. • “It’s the shunt, stupid!”

16. Urinary System Kidneys remove wastes from the blood  Flush wastes out in urine ↓ Down the ureter to the bladder ↓ bladder stretches like balloon  Sends message to brain that it’s full, needs emptying ↓ Brain sends message to open valves- urethra- and empty bladder

17. Kidneys remove wastes from the blood  Flush wastes out in urine ↓ Down the ureter to the bladder ↓ bladder stretches like balloon  Sends message to brain that it’s full, needs emptying ↓ Brain sends message to open valves-urethra- and empty bladder With spina bifda, messages don’t get through - the bladder may become rigid, -valves don’t work very well - can even be bladder spasms

18. Reflux • Sometimes urine flows back into to the kidneys from the bladder. • Can cause • Kidney infection • Kidney damage

19. Urinary System – Other Problems • “Bladder augmentation with intestine or stomach • Cancer conversion? • Produces mucous – blocks CIC, causes stone formation • Ileal loop problems • Stones, hydronephrosis • Cancer? • CIC long term?

20. Bowel Problems • 2/3 of adults have a satisfactory social continence pattern. • Regularity is most important. • Timed evacuation • Same diet • Same exercise pattern • Not related to the level of the spina bifida. • Megacolon • Unknown impact of chronic enemas, rectal bulbs.

21. Orthopaedic Problems • >50% found to have poor fitting braces. • Premature arthritis. • Shoulders • Knees in ambulators who don’t use crutches / braces. • Scoliosis progression if unfused. • Osteomyelitis (bone infection) from decubitus .

22. Skin Problems • This is where Pediatricians have the least experience. • Decubitus ulcers from pressure. • inadequate chair pads. • ill fitting braces, shoes • Decubitus from incontinence wetness.

23. Skin Problems • Decubitus from abrasion • Walking without covering • Feet protruding from wheel chair • Decubitus from tethering • Changes in foot position / deformity • Changes in gait

24. Skin Problems • Decubitus from poor circulation. • Dependent edema causes poor circulation and pressure. • Circulation is modulated by nervous system. • What is the impact of chronically purple or cold feet? • Fungal infections / In-grown toe nails.

26. Latex Allergy and Spina Bifida • 50% of people latex sensitivity. • Latex allergy can get worse. • Recommend: • Avoid exposure to latex in hospital and home. • Take copy of latex guide with you to doctor/hospital/work. • Carry non-latex gloves with you to doctor/dentist. • Medic-alert bracelet. • Epi-pen

27. Hypertension (High Blood Pressure) • 140/90 • “White coat hypertension” • Renal hypertension • Essential hypertension • Rule out Spina Bifida causes • Renal status—ultrasound, chemistries, imaging, scanning

28. Obesity • Major issue related to prevention – a health care problem for all in US. • Slower metabolism with aging • Poor diet / not enough exercise • Contributes to high blood pressure, heart disease, diabetes, sleep apnea. • Obesity more likely in Spina bifida. • Decreased mobility / decreased exercise

29. Heart Disease and Spina Bifida • Adults with SB at high risk for coronary artery disease and high blood pressure. • May occur at earlier ages in SB. • Causes: • Obesity, poor diet, lack of exercise. • ? other factors • Treatment: • Diet, exercise, medications for blood pressure.

30. Lung Disease • Interventions • Talk with your doctor if you get short of breath, have frequent or severe snoring, restless sleep. • Regular evaluation of scoliosis. • Exercise . • Yearly influenza vaccine; pneumococcal vaccine. • May require more in-depth testing (sleep studies).

31. Exercise • Individuals with SB are less likely to exercise: • More difficult to find exercise to do - need for special programs or special equipment. • Decreased opportunities. • Lack of motivation.

32. Sexuality • Deep personal relationships important to overall health and quality of life. • Mental health • Longevity (how long we live) • Making responsible decisions about sexuality. • Knowledge of avoidance of STD’s. • Avoid condoms containing latex.

33. Sexuality • Pregnancy - ability to become pregnant is not decreased for women with spina bifida. • Pregnancy may contribute to SB related problems. • Neurologic- shunt malfunction, tether symptoms. • Urologic - decreased continence, infections. • Orthopedic - gait changes, decreased mobility, pain, muscle strain . • Men – many can achieve erection / ejaculation. • Low level spina bifida the better. • Fertility often decreased (but isn’t zero).

34. Pain • May be one of the most common concerns among people with spina bifida as they get older. • Joint stress / muscle strain • Earlier onset of arthritis • Other causes • Important to listen to signals your body is giving you.

35. Mental Health • Substance Abuse • Including smoking, alcohol and illicit drug use. • Individuals with disabilities at increased risk; incidence in adults with SB not known. • Limits ability for relationships, work, independence. • Contributes to other health related problems.

36. Mental Health • Individuals with SB at increased risk for limited socialization. • Limited experiences and practice. • Contribution of Non-verbal Learning Disabilities (NVLD). • Depression an important mental health issue. • Interventions - social interactions based on interests, counseling, medications.

37. Finding a Health Care Provider • Ask your pediatrician or specialist. • Talk to others with a similar disability and health care needs. • Talk with your MRDD service facilitator, case manager, advocacy organization, disability agency.

38. Finding a Health Care Provider • Find out if the office is physically accessible. • Parking • Exam table • Restrooms • Visit new provider; decide if he/she is a good match.

39. Talking with your health care provider • Before the visit, write down your questions and concerns. • Ask your provider questions. • If you are worried, say so. • If you don’t understand, say so or ask: “Could you please repeat that?” • Bring a friend or family member with you to help ask questions or make you feel more comfortable.

40. Health Records • Ask your pediatrician, specialist to transfer your medical records to your new provider. • Keep your own record of your medical history-if your parents have already started it, add to it. • Take these records with you to your . • appointment.

41. Making a Portable Medical Record • Start collecting history now. • Transferring the medical record at 18 or 21 will not work. • Begin a notebook that includes: • Surgeries (ask for reports) • Radiology procedures (ask for reports) • Illnesses needing ER or hospitalizations • Medications and any reactions • Equipment (dates of purchase/repairs and providers) • Immunizations

42. Useful Websites for Portable Medical Records • Some websites have health history notebooks to download • http://www.cincinnatichildrens.org/svc/alpha/c/special-needs/resources/default.htm • http://depts.washington.edu/healthtr/healthhistory/default.html • http://www.medicalhomeinfo.org/tools/assess.html

43. Health Care Skills Checklist • I have a good understanding of spina bifida. • I keep records about my medical history. • I understand and practice healthy habits. • I manage my own medications. • I know how to refill prescriptions. • I make my own medical appointments. http://depts.washington.edu/healthtr/healthhistory/default.html

44. Health Care Skills Checklist • Make Health Care Appointments. • Talking with Health Care Providers. • Know how to get the doctor’s office. • Keep a calendar of medical appointments. • Know medications. • Wear a medical alert bracelet. • Know allergies. http://depts.washington.edu/healthtr/healthhistory/default.html

45. Health Care Skills Checklist • I order my own medical supplies. • I understand my medical insurance coverage. • I am able to arrange transportation to medical appointments. • I communicate my health needs to my doctor. • I carry emergency numbers with me in my wallet. http://depts.washington.edu/healthtr/healthhistory/default.html

46. Medications • Know your Medications, dosages, and frequency and carry a card in your wallet.

47. Sometimes it’s hard to remember to take your medicine

48. Take care of your own menstrual needs. • Keep a record of monthly periods.

49. Recommendations • Go to a Primary Care Provider who knows about coordination of complex conditions. • Internist / Med-Peds physician • Family Practitioner • PM&R

50. Recommendations • Medical screening: • Blood pressure, height & weight periodically 18 years and older. • Cholesterol testing: • Men - regularly 35 years and older. • Women – regularly 45 years and older. • Screening for colon cancer after 50. • Tetanus shot every 10 years.