Essentially, SMA is the pediatric version of ALS (Lou Gehrig’s disease).
We were told that she wouldn’t live past 8 years old. She’s clearly blown right past that prediction – she is 18 now, and is an incredibly positive, optimistic young woman.
I’d love to say she hasn’t slown down a bit, but the truth is – she has. Erinne used to walk with the assistance of a walker, but the disease has progressed and limited her physical abilities. She now she uses a power wheelchair, needs assistance to feed herself and breathes with the help of a ventilator while she’s sleeping.
One of the challenges with this disease is managing Erinne’s pain. She has four rods in her spine and a dislocated tailbone that causes severe pain. We tried many avenues to manage the pain without much success until our care team suggested a referral to palliative care services.
What’s in a name? The term palliative care is confusing to many. Oftentimes people associate it with end-of-life care, or hospice care. A poll taken in 2011 revealed that more than 75% of the public lacked knowledge regarding this service.
Although hospice and palliative care overlap in their goals of reducing suffering and providing comfort, the main difference is hospice care is typically for patients who are terminal, or within six months of death, and palliative medicine can be received at any time, whether terminal or not.
Individuals in hospice have chosen to end curative or aggressive treatment, and focus on comfort measures and the dying process. Palliative care patients are often in the midst of active treatment, but need care for distressing side effects from treatment or disease.
Sometimes a referral to palliative care can cause fear in patients and their families because of misconceptions regarding the term. Because of this, some cancer centers have chosen to change Continue reading →
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