Staying Well After SCI - Pros and Cons Of The New System

Pros and Cons of the New System •That’s great, but now where do I go for my medical care? •What does all this mean to you???? Pros and Cons of the New System • New emphasis on the “patient centered medical home” validates and reinforces the rehab model • Team approach with the patient at the center • Each member of the team has a different area of expertise to offer Pros of the New System • Community based care allows for home visits and better access to care • NP becomes the first “go to” person and helps you choose the best person on the team to help solve the problem • Regular team meetings allow team members to “pick each other’s brains” to solve problems Cons of the New System • Large influx of new patients all at once means that you may be seeing someone without a lot of experience with SCI in particular • Not a new issue- in the regionalized model people returned to their home community after rehab and resumed their relationship with their local doctors • Details are still being worked out – things keep changing. This gives us a chance to be part of the solution. Draw on the Strengths • So it still all comes down to arming yourself with as much accurate information as you can • Go to lectures like this one, learn as much as you can • Best resources - Paralyzed Veterans of America , National Spinal Cord Injury Asociation (NSCIA) Take Charge of Your Health • In brief, your best bet is to know your own body and be able to articulate your needs and concerns. • Use all available resources to educate yourself about SCI and its known problem issues. • Loss of the regional model means that people who know about SCI are scattered in different places. Take Charge of Your Health • YOU are the one who knows your own body best. • In the new world of health care, you may well be the person who knows the most about SCI in the room. • The good news is that health care providers want to help and are trained to recognize disease patterns. Opportunities • New communication platforms (including EMR) increase access to information that was previously locked away • If you are far from SCI resources, encourage your provider to call a regional center for help Make the Most of Your Visit • Be as organized as possible so you can use your time efficiently • Consider writing down any questions or concerns you have so you can be sure they will be addressed first Make the Most of Your Visit • Be sure that all of your most important concerns are addressed at each routine follow-up visit as there may be a relationship between seemingly unrelated symptoms that unlocks the puzzle. A Great Place to Start • Dr. Freed used the mnemonic •NIBBLES NIBBLES • • • • • • • N- Neurologic and Orthopedic Status I- Integument (Skin) B- Bladder and urinary tract B- Bowels and digestive issues L- Lungs and general medical issues E- Equipment issues S- Sexuality and psychological concerns N- Neurologic and Orthopedic Status • Has there been any change in your motor or sensory level since your last visit? • Are you in any pain? If so, where is it and what does it feel like? • What makes it better? What makes it worse? • Are there any joint deformities? Fractures? Changes in ROM? Spine deformities? Osteoporosis? N- Neurologic and Orthopedic Status • Spasticity- Has there been a change in your level of spasticity? • If so, in what time period? • What part(s) of your body are affected? • Does it interfere with your function or sleeping? Does it hurt? • Or does it actually help? N- Neurologic and Orthopedic Status • Be alert to changes in the baseline pattern and level of your spasticity. • Spasticity will increase in response to noxious stimuli (anything that would hurt) so it may be the first sign of a problem. Spasticity- “Sentinel Symptom” • A change in the level of your spasticity should trigger a search for the cause. • Most times, the source will be in the urinary or digestive tract. • It can herald the beginning of a UTI, a stone, a fecal impaction or a pressure sore. I- Integument • Skin issues are one of the most devastating and difficult issues after SCI • It takes very little sustained pressure to cause tissue damage • Skin ulcers are like icebergs- what you see on the surface may not be the whole picture Protecting Your Skin • Pressure Relief is key• Frequent turns, physically shifting weight and pressure relief cushions and mattresses are helpful. • Taking pressure off bony prominences helps prevent deep tissue loss. • “The price of freedom is eternal vigilance.” • “An ounce of prevention is worth a pound of cure.” What to Do • Do your pressure reliefs, make sure your equipment is properly maintained. • Watch your technique during transfers, especially toilet and car transfers. • At the first sign of breakdown, get off it and call your provider!! B- Bladder and Urinary Tract • Neurogenic bladder is present in most, if not all, people with SCI in one form or another and needs to be addressed. • Before Sir Ludwig instituted the ICP technique, repeated UTIs and renal failure shortened life expectancy after SCI to an average of 18 months. • Goals of bladder management include- Goals of Bladder Management • Prevent the backflow of urine back up into the kidneys. • Keep pressure within the bladder at optimal levels to protect delicate kidney tissue. • Limit the number and type of bacteria present in the urine to prevent infection as much as possible. Goals of Bladder Management • Prevent incontinence to keep skin dry and prevent odor • Limit the amount of time that foreign bodies are present in the bladder- they increase infection and risk tumors • Prevent formation of stones • Prevent infection • Early detection and treatment of poor kidney function or tumors Treatment Options • Medications to reduce high bladder pressure and promote urine flow • Adequate fluid intake • Intermittent Catheterization • Suprapubic Tube and Foley Catheter- should be used as a last resort • Botox – limited applications • Urinary acidifiers to create a hostile environment for invasive bacteria Screening • Baseline Urodynamics to determine pressure levels and timing of muscle contractions. • Renal Ultrasound every 2-3 years • Urinalysis and Culture to assess UTI symptoms • Be alert to symptoms of spasticity or AD • Check blood work as needed B- Bowel • Neurogenic bowel is present in most, if not all, people with SCI in one form or another. • Maintaining continence is a goal that can be reached but it requires a structured bowel care regime and a carefully balanced diet. B- Bowel • Let your provider know if you are having accidents, AD symptoms, increased spasticity, dark, tarry stools or rectal bleeding • People over 50 or who have a positive family history of colon cancer or polyposis should be screened with colonoscopy just like the general population L- Lungs, Cardio, General Medical • Breathing issues, circulatory issues, screening for lipid disorders and diabetes • Risks for these are increased in SCI • If your spinal cord level is above T6 tell your provider about AD episodes • Follow general principles for recommended screenings including STD / chlamydia, lipid disorders, diabetes, colorectal, breast, cervical and other cancers L- Lungs, Cardio, General Med • • • • • Immunizations Nutrition and Weight Management Obesity is a major risk! Regular Exercise BP Checks E- Equipment • Mobility- Wheelchair, hand held assistive devices, braces, shoes, adapted vehicles. • ADLs- Adaptive equipment including electric beds, pressure relief mattresses, shower/commode chairs, pressure relief cushions, reachers, splints, utensils, ECU’s. E- Equipment • Vocational Equipment- Computers, voice activated software, speech synthesizers, magnifiers, TDD devices, etc. S• • • • • • Sexuality, Psychological Adjustment Neurogenic sexual dysfunction Fertility / STD’s Adjustment to Disability Depression, substance abuse screening Family Stress Community re-entry Conclusions • Staying well after SCI is possible but it takes work and commitment on everyone’s part. • Current changes in health care present challenges and opportunities for us to work together to make wellness an achievable goal. Resources • PVA- Paralyzed Veterans of Americaexcellent series of monographs available as PDF files or in print. These review topics like Neurogenic Bowel, Neurogenic Bladder, Autonomic Dysreflexia, etc. in plain English for consumers as well as health care providers. • ASIA- American Spinal Injury Association• For people with and without medical backgrounds. They maintain accepted standards so research results can be uniformly applied. Education for patients and providers. Resources • Christopher and Dana Reeve Foundation • MISSION STATEMENT: The Reeve Foundation is dedicated to curing spinal cord injury by funding innovative research, and improving the quality of life for people living with paralysis through grants, information and advocacy. Resources •Travis Roy Foundation MISSION STATEMENT The Travis Roy Foundation is dedicated to enhancing the life of individuals with spinal cord injuries and their families by providing adaptive equipment and to finding a cure through increased funding of research, resulting in self‐reliance and the ability to be as independent as possible Resources • NSCIA- National Spinal Cord Injury Association • Mission • Our mission is to improve the quality of life of all people living with spinal cord injuries and disorders (SCI/D). • We provide active-lifestyle information, peer support and advocacy that empower individuals to achieve their highest potential in all facets of life.