“Finding Hope”- 2007

During a recent ALS Association Support Group Meeting here in Buffalo, New York (USA) a young woman whose mother had recently been diagnosed with ALS asked the following question -
"How can I find a way to encourage my mom who has recently been diagnosed with ALS to participate with support groups etc., so that she might learn, & benefit from what others have experienced with this illness?

   As I drove home that evening it occurred to me that one of the most beneficial things that a patient might consider upon diagnosis is to find a family member, a friend, or an associate who is willing to act as an advocate for them. A person that can help the patient become more familiar with the progression of the illness & the issues that will need to be addressed.

.  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.

   If  you are in the early stages of the disease, probably the last thing you want to think about  is the fact that ALS is progressive. Unfortunately, denial won’t keep it from happening. The best way to arm yourself with “strategies that can promote hope”,  is to look for hope whenever & wherever you can find it.

   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.

During our journey we found that the following Video / DVD  provided some of the finest information available regarding ALS care. Information that explores the illness in a manner that encourages timely discussion of the many important issues-

 The ALS Association’s

Living With ALS - Clinical Care Management
Discussion among ALS Experts

Taken from the Neurology publication :
 Practice Parameter : the Care of the Patient with Amyotrophic Lateral Sclerosis
(an evidence-based review)
copies of which are available through:

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”

(see the following web site links for additional information) –

MDA / ALS Division
http://www.mdausa.org/clinics/alsserv.html
 

The ALS Association
http://www.alsa.org/community/clinics.cfm?CFID=427067&CFTOKEN=43068155
 

ALSconnection
is a patient driven ALS registry that aims to collect data from persons with ALS.  It is coordinated by Dr. Robert Miller,
Dr. Jonathan Katz and Dr. Catherine Madison who are physicians with a vast experience in treating ALS patients.

This data base aims to collect information from PALS (Person with ALS) who are not yet captured in data bases such as ALS Care.
We choose to collect data on the internet, because we hope to reach more people in different regions of the nation.
The goal is to obtain long-term follow up data and information about quality of life as well as experiences of PALS. 

(Forbes Norris MDA/ALS Center)
http://www.alsconnection.org