The continuing evolution of our Journey - “An open letter to those with ALS”
January 2005

Following attendance at the 15th International Symposium on ALS / MND in Philidelphia Pennsylvania - USA

 

As you explore this web site you will be aware that my wife Donna was diagnosed with Amyotrophic Lateral Sclerosis in the early fall of 1997 & passed away on Valentines Day 2001.

Despite her illness Donna greeted the wonder of each day, embracing the strategies / treatments  that many have labored to establish, and it was always her prayer that we would to find ways to convey information regarding those efforts to keep hope alive for others.

With those thoughts in mind I attended the 12th International Symposium on ALS / MND in Oakland California in 2001 and more recently the 15th International Symposium in Philidelphia Pennsylvania in December 2004.

Programs like these, coupled with volunteer particapation with the MDA, the ALS Association, and Hospice have intensified my awareness of some of the more recognized quality of life treatments & strategies for those with ALS”.

Just recently an ALS patient whom I had visited encouraged me to write this open letter to summarize some of the more  recognized “Evidence-Based Practice Guidelines” that I have become aware of.

Certainly circumstances and needs vary between patients.

However, practices such as the following were reviewed & statistically evaluated during presentations at the  15th International Symposium, and were identified as having a major positive impact for those with ALS -  

Respiratory Management / Managing Breathing Issues
Non-invasive Ventilation

Nutritional Management
Feeding Tube – providing assurance that a patient can receive adequate liquids / hydration, nutrition, and medicines throughout their illness (including when swallowing becomes impaired)

Saliva / Phlegm Control & Maintenance of Lung Elasticity
Cough Assist (Cofflator) and Suction Devices

Range of Motion Movement
Passive exercises

Lifting and Transferring
Selecting equipment that can function appropriately within your particular living space

Communication Devices
Assistive devices that are available to fulfill a patients specific needs

Miscellaneous Adaptive Equipment
Remote switches / signaling devices etc.

Hospice Care
Recognizing the many benefits of participating in this most valuable care

Multidisciplinary Clinics
Monitoring patients & providing input regarding “Evidence Based Practices” that may be applicable

Participation in Clinical Drug Trials

 

In a newly published reference guide introduced at the 15th International Symposium -

“Amyotrophic Lateral Sclerosis” –
“An
American Academy of Neurology Press Quality of Life Guide”,
Robert Miller, MD - Deborah Gelinas, MD, - Patricia O’Oconnor, RN
(Demos Medical Publishing)
2005

The writers indicate :
“ALS is not a curable disease, but it is a treatable one. Treatments are now available that can make a major difference in prolonging life and enhancing the quality of life  for people with the disease, and  there are treatments for many of the symptoms of ALS that can help ease the burden”.

 

 


On pages 77 through 80 of the referenced Guide – The writers expand on the importance of  “Evidence–Based Medicine in Managing ALS” with particular emphasis on nutrition / feeding tubes & managing breathing issues. They also comment that “The goal of evidence-based practice guidelines is to raise the standard of care for all patients and to standardize the way in which different practitioners administer care.”

In an Article – “Wheelchair Control Devices Keep You Driving” - by Kathy Wechsler (October 2004 Issue of the MDA/ALS News Magazine)

ALS patient Jim Matzinger is quoted to have said  (with regard to wheelchair control devices) - If you’re 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 against losing your mobility is to plan ahead.

Planning ahead can have a very significant impact on a “Patient’s Quality of Life” and Organizations like the Muscular Dystrophy Association, and ALS Association can provide up to the minute information regarding care, locations of Multidisciplinary Clinics as well as Clinical Medicine Trials etc. that can assist a patient in planning (see the following web site links for this 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

 

Donna always felt that;

The key to benefiting the most from special equipment and care strategies available, was to become familiar with them before a particular need became critical,

And it made all the difference !