A spinal cord injury (SCI) will likely lead to drastic changes to your lifestyle and body. Learning about these changes can prepare you and your loved ones for your new life.
Knowledge is power, whether you're going back home or staying in a care center.
Knowing about your body and what resources are at your disposal will allow you to improve your care and life.
To learn more about spinal cord injury rehabilitation or to refer a patient, call 1-877-287-3422.
When you're first released, you'll need to know what follow-up care you need.
All people with an SCI should plan to see an SCI doctor in the first few weeks after leaving the hospital.
These include:
After a new SCI, you'll see an expert in the clinic every few months. Over time, you may only need to see them once a year.
These routine follow-ups will be with an SCI expert who knows about your specific injury and related problems.
Save your instructions when you're discharged from the hospital or seen in an outpatient clinic.
Refer to these instructions at home and share them with your:
The more you share with your team, the better your care will be.
After leaving the hospital with an SCI, you should continue physical and occupational therapy.
Home health care can be an easy way to access therapy. But there are some constraints to what they can do in your home.
People with an SCI should transition to outpatient therapy as soon as possible. The outpatient rehab site you choose should have therapists who know how to work with people with an SCI.
Our spinal cord clinic can refer you to outpatient rehab programs with SCI experts.
Many people with an SCI improve after their initial injury.
Over time, your functioning should stay at the same level or improve. If you notice a decline, visit your SCI doctor as soon as you can.
Some conditions that impair your physical functions include:
Your impairments may limit your ability to perform basic day-to-day tasks like bathing or getting around. They may also impact your ability to take part in your hobbies and enjoy your life.
Finding ways to interact with your loved ones and other people with shared interests is crucial.
These factors can impact how you choose to spend your time:
While adjusting to life with an SCI, knowing how your body has changed can help.
Staying healthy will be more challenging than it once was. But, you can prevent some health problems related to your SCI.
Prevention may mean lifestyle changes. Taking control of your health is vital.
Lifetime health and wellness can help manage your SCI.
People with an SCI have some cardiovascular cards stacked against them.
They often have:
These risk factors for heart and blood vessel diseases make it even more important to stay healthy. They can lead to heart attacks, strokes, and other issues.
To lessen your risk of getting heart and vascular disease, you'll need to:
People with an SCI have higher glucose intolerance and risk of getting diabetes.
Type 2 diabetes is when the body has high blood sugar levels. When sugar builds up in the blood, it can cause several health issues.
Steps to help reduce the risk of diabetes include:
After an SCI, your legs may swell. This swelling, called edema, can get worse over time.
Edema can:
It's vital to control edema in its early stages. Often, you only need to elevate your legs and wear compression stockings.
You may need medicine or other treatments to control swelling if your edema worsens.
Depending on the level of the injury, your SCI may impact your lungs.
People with more severe SCIs may have problems breathing or coughing. These lung changes can increase the risk of pneumonia.
If you're at risk of lung diseases or breathing problems, a pulmonologist can help prevent issues.
Often, assisted cough can help clear the lungs of secretions. You can perform an assisted cough manually or with a "coughalator" machine.
Sometimes, you may need medicines or treatments to prevent lung issues.
The many changes to the body's metabolism after an SCI make staying at an ideal weight hard. People with an SCI may have issues with being underweight or overweight.
Being underweight can increase the risk of health problems and inhibit healing.
Taking in more calories from healthy foods can increase weight. You may need shakes or drinks to gain weight in a healthy way.
Some people gain too much weight after an SCI.
Besides changes in metabolism, it's harder to exercise. Some options include pushing a manual wheelchair or using a hand cycle.
Changing your diet is the best way to lose weight if exercising after your SCI is harder.
A dietitian or nutrition expert can offer ways to adjust your diet to stay at a healthy weight.
Living on your own after an SCI can be hard. You and your loved ones often must change your home and lifestyle.
On top of a new way of life, you'll also need to navigate a complex resource system. You need to know about programs that might help support your needs.
Case managers and staff at the UPMC Rehabilitation Institute can help with this.
After an SCI, you must advocate for yourself.
You may qualify for many of the programs tailored to people with an SCI based on your:
Workers' compensation might help with your care if your SCI happened on the job. You may get more help if you go back to school or work.
Some people with an SCI may receive financial support through Social Security.
Waiver programs are available throughout Pa.
Talk to your SCI care team to see if you qualify. They can also help find waiver programs outside of Pa.
The Attendant Care Waiver is a state-funded Act 150 program for people with physical disabilities. It may help cover personal help and other goods and services.
You may qualify if:
The PDA Waiver Program is a Medicaid home-based waiver program for people 60 and older.
You must meet the level of care needed for skilled nursing and the program's other requirements.
The Pa. Independent Enrollment Broker helps to ease the application process for many waiver programs in Pa.
Call 1-877-550-4227 to learn more and start the enrollment process.
They can help qualified people over 60 with an SCI apply for Area Agencies on Aging programs.
They can also help eligible people ages 18 to 59 who are applying for:
Transportation programs vary by location.
Some drive you to or from the doctor, while others take you to other places.
A UPMC Rehabilitation Institute staff member can see what the options are in your county.
The Pa. Assistive Technology Foundation offers loan programs for assistive devices to those who qualify.
A member of your UPMC rehab team can help you figure out what loan programs are available.
Private duty agencies are for-profit companies that provide in-home nursing care for a fee. Insurance doesn't cover the cost of care.
When deciding if this option is a good fit for you, ask if the agency requires a minimum number of hours. This can help you figure out the cost of care.
You should screen the staff they assign to you.
The Pennsylvania OVR helps people with disabilities return to work.
OVR counselors help identify your work goals and arrange for:
Call the Pa. OVR office near you to learn more.
There are many resources to help people with an SCI plan for their future.
Basic life care planning may include:
In addition to basic plans, for-profit companies can help create complex life care plans.
UPMC is not affiliated with and doesn't endorse any life care planning companies.
A person with an SCI may qualify for funded personal care assistants or may choose to pay out of pocket. Qualification may depend on age, financial status, and other factors.
The need for a personal care assistant varies with the level of SCI. A person with paraplegia may be less likely to need a personal care assistant than someone with weak arms.
In either case, the person with an SCI needs to know how to hire, fire, and manage health care workers.
Your loved ones, SCI doctor, or UPMC Rehabilitation Institute case manager can offer advice on managing your care assistants.
Respite care is a short-term break for people who care for loved ones at home.
A short break from living at home can benefit both the person with an SCI and their loved ones.
Respite care happens at skilled nursing centers.
Ask your SCI doctor or UPMC Rehabilitation Institute case manager about respite care programs.
The UPMC Rehabilitation Institute:
Our SCI doctors and care team:
For more about SCI rehab or to refer a person with an SCI, call 1-877-287-3422.
