My husband, our father and friend was diagnosed with bulbar onset ALS in November of 2017 after months of slurred speech and difficulty swallowing. This was a devastating diagnosis for our family and support system as we know as of this point in time, not only is there no cure and no realistic way to slow progression, but also not many treatments for symptoms. With the difficulty in swallowing he was unable to stay properly hydrated so he had a G Tube place in June of 2018. Since that time he has lost the ability to eat or drink anything and has lost the ability to speak. No more going to dinner with friends and family, never to drink a cup of coffee, glass of wine or enjoy (even taste) your favorite foods..... Ever again.... Never have the same level of conversation and communication with family or friends, never have the ability to kiss your loved one’s goodnight, as your facial muscles have become paralyzed. The ability to take a nice deep relaxing breath are gone as your diaphragm is impaired, just breathing and clearing your throat are exhausting. The simplest of pleasures we all take for granted become daily challenges. Taking a shower is now a chore instead of a luxury and requires sleep after, as it takes all energy you have for the day for that simplest of tasks. To never have the ability to carry your grandchildren as your muscles are to weak to hold the smallest child and to know shortly you won't have the strength to raise your arm to brush your own teeth. All the while your brain is completely intact just as nothing has changed. The daily grieving is real, as every day is a new loss not only for PALS (People With ALS) but for their families as well. We sit by and watch with heartache as we try to help and provide all the support we can in a helpless situation.
On the good side I have found time to truly be present, enjoy the moments we have together and truly cherish how grateful I am to have a such a wonderful, supporting husband and father to our children. He has always been my strength and biggest support in life. Gus has committed his life to helping and giving to others and with that has been a tremendous role model for our children and others to follow. He has had great pride and dedication to his work and has formed lifelong friendships in the process. Please consider donating or just joining our team to walk or share my story with others through email sharing or social media. I do truly believe that we can start to find solutions and ultimately a cure but we need to spread the word and work together to make that happen.
The San Diego chapter of the ALS Association helps local families on a daily basis by offering personal support through home visits, Dr. visits, much needed supplies, equipment, emotional support, educational events, access to care, transportation, resource referrals and most of all a great support system of understanding for families enduring this struggle. They would not be able to give the support they do without proper financial resources. Thank you for helping me reach my Walk To Defeat ALS and spread awareness of the urgency to find treatments and a cure while supporting the chapters ability to continue supporting families with their unyielding dedication.
Every 90minutes a person in this country is diagnosed with ALS and every 90 minutesanother person will lose their battle against this disease. ALS occursthroughout the world with no racial, ethnic, or socioeconomic boundaries.
That’s whywe’re participating in the Walk to Defeat ALS. To bring hope. To raiseawareness. To provide resources and services to families free of charge. Tohelp unlock the mystery of ALS and find the key to treatments a cure. Will youjoin us?
Amyotrophiclateral sclerosis (ALS) is a progressive, fatal neuromuscular disease thatslowly robs the body of its ability to walk, speak, swallow and breathe. Thelife expectancy of a person with ALS averages 2 to 5 years from the time ofdiagnosis.
ALS canstrike anyone. Presently there is no known cause of the disease, yet it stillcosts loved ones an average of $250,000 a year to provide the care peopleliving with ALS and their families need. Join the movement to provide help andhope today!