Maintaining Good Nutrition

I attended the International symposium as an observer to represent my wife Donna with two words in mind, "Grateful" & "Hopeful".
Donna was diagnosed with Amyotrophic Lateral Sclerosis in the early fall of 1997 and passed away on Valentines Day 2001.
Despite the prognosis that is associated with this illness Donna was always hopeful, and most of all grateful for each and every day.

While there currently is not a cure for ALS or a medicine that can substantially delay the course of the illness,
there are strategies that can significantly improve and extend a patients "Quality of Life".

Donna focused on living. She greeted the wonder of each day embracing the strategies that many have labored to identify.

We are extremely thankful for -

- The Buffalo & Western New York Muscular Dystrophy Associations ALS Clinic, directed by Dr. Carolyn Warner.

- The Neuromuscular Clinical Trials Unit at Syracuse University Hospital,directed by Dr. Jeremy Shefner, where Donna participated in the Sanofi (SR 57746A) Double Blind Clinical Study.

http://www.upstate.edu/neurology/uhneurology/amyotrophic.shtml

Donna embraced many of the most current strategies that the clinical staff introduced. Pioneering in some (for this area in the country) , and always hopeful that the knowledge gained would somehow benefit others in the future such as -

Keeping breathing passageways and lungs clear with an In-exsufflator.
Resting breathing muscles through use of non-invasive ventilation.
Maintaining nutrition and hydration while limiting the possibility of aspirating foods or liquids into the lungs through the timely use of a Percutaneous Endoscopic Gastrostomy (PEG) feeding tube.
Various medicines & irradiation treatments in conjunction with the use of a suction device for saliva control.
Accepting the need to utilize walkers, wheelchairs, lifts & positioning devices, etc.
Maintaining range of motion through assisted stretching exercises & massage which included music therapy.
Participating in clinical trials & multidisciplinary clinics with the principal hope that the demonstrated benefits may help others in the future.
Recognizing the miracle of still being able to -

See
Hear
Comprehend & communicate in order to enjoy those around her, with the help of an electronic communication device.

Donna met each challenge with a grateful smile in a manner that continually provided new hope for others while acknowledging God's loving assistance every step of the way.

We are eternally grateful for the dedicated specialists here at the Symposium &
throughout the world that continue working to establish new hope for those with ALS.