“Finding Hope”- 2007
. We found during our journey that there were many junctions in the road that were imposed by the advancing disease. Junctures that needed to be carefully reviewed and discussed at various intervals. We experienced a great deal of hope by reviewing & selectively implementing many of the evidence-based care practices that have been established for ALS patients.
The answer to the above referenced question may not necessarily lie in getting the patient to participate in support group meetings if they prefer not to. While that kind of participation can be effective for some, others might want to obtain information in a more measured manner as filtered through others acting as their advocates.
In the past three years as a Hospice “Respite Care Volunteer” I have been invited into the homes of many families addressing ALS. During those visits I observed how powerful and helpful it is for a patient to have a family member, friend or associate acting as their advocate.
The ALS Association’s
Living With ALS - Clinical Care Management
Taken from the
Neurology publication :
Planning ahead can have a significant positive impact on quality of life issues for the patient and their caregivers.
Organizations like the Muscular Dystrophy Association, and ALS Association can provide the most current information regarding ALS care, the locations of Multidisciplinary Clinics, as well as on-going Clinical Medicine Trials etc..
Advocates working on behalf of patients can
provide much needed assistance in exploring the many “strategies
that can promote hope”
/ ALS Division
This data base aims to collect information from PALS (Person with ALS) who
are not yet captured in data bases such as ALS Care.
(Forbes Norris MDA/ALS Center)