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The Post Rehabilitation Stage: Home Sweet Home
A lot of SCI survivors realize quickly how different it is applying what is learned in the clinical setting of a rehab facility in the real world setting of home. Undoubtedly, new struggles and problems arise and it is important to remember that life is where the real therapy happens. It is trial and error and each survivor and their caretakers will stumble a little at first as the system that works best for their individual needs is established.
During this period of transition where survivors and caretakers are still getting acclimated to being at home it is a good idea to come up with a plan of action in case some type of medical emergency arises. It is often recommended to contact the local fire department, EMS service, or any other emergency medical responders in the area to notify them of your individual needs due to the SCI in case of an emergency. Often, they will designate your house as special needs and response times will be rapid.
It would also be beneficial to find out which hospital services your area and then contact the ER supervisor to make sure they are aware, as well. It is never a good idea to assume all medical personnel know what AD is or how to treat it. The Paralyzed Veterans of America puts out booklets for both professionals and individuals on numerous topics including AD and also have convenient wallet sized cards to carry with you. Check out www.pva.org.
Another helpful idea is to carry a small binder in a wheelchair backpack with lists of all current meds, all doctor’s names and phone numbers, a medical history, the AD pamphlet for professionals from PVA and any medical needs should there be a need for hospitalization (i.e. mattress, turning, bladder care, skin care, etc.) It will allow for peace of mind and can be extremely helpful in an emergency.
Generally, a physiatrist will be the best choice for handling primary care because they are trained in both rehabilitation and management of long term chronic disability. The best way to find out if they have experience with SCI is to ask how many SCI patients they treat and if they have any additional board certification in Spinal Cord Medicine. These are good indicators of their expertise in the field.
Physiatrists with a background in Spinal Cord Medicine will not only be very knowledgeable about SCI rehab, but long term needs such as spasticity management, equipment needs, secondary complications, bladder care, annual evaluations, skin care and anything else that may arise. A physiatrist will also be able to refer you, when needed, to urologists, neurosurgeons, orthopedists, plastic surgeons and other specialists comfortable with SCI care.
Before an issue ever arises with a wheelchair find a local wheelchair vendor/supplier who is familiar with the brand/type of chair you own and who is also able to provide back-up chairs, whether it’s power or manual, to get you through the interim in case parts must be ordered or it takes a little time to fix your personal chair. Developing a good relationship with a vendor who can communicate and understands your needs is paramount to making sure you stay on-the-go.
As time goes on, many SCI wheelchair users acquire a back-up chair of their own to have on hand so it’s not an ordeal when the everyday chair requires cleaning, maintenance or repair.
There are two options people take and it usually depends on how much insurance covers or how much one can afford to private pay.
Home Health Care Agencies: provide in-home supportive services that range from skilled nursing care and therapy (occupational, physical, respiratory and speech) to assistance with activities of daily living and housekeeping.
Personal Care Attendants: A personal care attendant (PCA) is an independent caregiver who can help with activities of daily living (like getting in or out of bed, bathing, dressing, and going out into the community). It is your responsibility to hire, train, supervise, and pay for a PCA.
There are pros and cons to each avenue. Going through an agency insures that someone is always available to fill-in in case of a regular aide being sick or having some other type of emergency. An agency is also responsible for offering workmen’s comp and taking care of tax issues. However, agencies determine exactly what their employees can help with and in most states they are not allowed to do bowel care, catheterization, administer meds, or do any other invasive or sterile procedures. Agencies are also way more expensive than hiring a PCA. They also tend to send whoever is available so you may be retraining a person on your care needs regularly, which takes time.
Hiring a PCA can be daunting, but could be beneficial if one’s needs require more help than just bathing and dressing. Many people use ads posted at local universities and on Craigslist to find PCAs. It is important to create a clear contract to communicate what the expectations are and to run background checks on any person you plan to hire as a PCA. Also, the employer is responsible for Social Security taxes, even if the PCA is paid in cash. It is also important to check the homeowner’s insurance policy for worker’s comp coverage to protect both employer and employee.
If planning to advertise for a PCA, consider using our Printable PDF Example of PCA ad and Interview Questions
The same things that were important pre-injury are doubly so now. Proper nutrition and an exercise regimen will allow for easier weight management. Weight management is important on both ends of the spectrum. Being underweight causes bony prominences to protrude with no cushioning to protect the skin from pressure ulcers and poor nutrition impedes proper healing of any wounds. However, on the flip side, being overweight makes transfers harder, puts more strain on the shoulders and creates skin folds where moisture and friction combined can cause pressure ulcers.
It is extremely beneficial to continue a standing program once at home, as well. Standing and other various forms of load-bearing activity promote healthy bone density, lessening the chance of early onset osteoporosis. Standing also contributes to maintaining good blood pressure, decreasing contractures and improving circulation. New and used standing frames can easily be found on the internet.
In general, finding adaptive hobbies or sports and keeping an active lifestyle will aid in overall health, not only physically, but mentally.
Talk to a physiatrist because there are multiple procedures available to help make independence achievable, especially for those with limited hand function. Tendon transfer surgery is a type of hand surgery that is performed in order to improve lost hand function. A functioning tendon is shifted from its original attachment to a new one to restore the ability to “pinch.” The ability to “pinch” enables people to grasp objects, like a fork, pen or catheter, without the use of assistive devices. Other surgeries make daily catheterizing easier, especially for females. For example, the Mitranoff procedure creates a small tunnel from the bladder to the outside of the body, usually to the belly button. This tunnel is used to empty the bladder with a catheter reducing the need for getting completely undressed. The suprapubic catheter is another option that avoids major surgery like the Mitranoff procedure. A suprapubic catheter is an indwelling catheter which drains when unplugged into a urinal or into a leg bag. It is minimally invasive and can be removed.