Amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig's disease, is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow, and breathe. The life expectancy of a person with ALS averages 2 to 5 years from the time of diagnosis. ALS can strike anyone regardless of age, gender, nationality, or ethnicity, although it is primarily an adult-onset disease. Currently there is no known cause or cure.

Since our last walk, Aaron is no longer able to use the bathroom by himself.  He requires assistance from me or our caregiver and it involves a lift which we use to transfer him from toilet to wheelchair.

Since our last walk, Aaron has lost functionality in his hands.  While he is still able to use adaptive utensils it has become extremely difficult.  Whenever possible he prefers to eat foods like sandwiches or things he can easily pick up with his hands.

 

Since our last walk, we remodeled the bathroom so that Aaron could take a shower more easily and we installed a taller toilet so that it would make it a easier transition (although that was short lived).

 

Since our last walk, we removed the carpet and installed a hard surface floor in our bedroom to make it easier to roll around equipment needed to support Aaron.

Since our last walk it is now routine for me to get up 2 or 3 times a night to help Aaron either sit up to use a urinal at the side of the bed or to help him transfer to his wheelchair to get to the bathroom.  I’ve tracked my sleep and on average I’m up for 2 1/2 hours overall each night.  It took awhile getting used to but now it’s just part of the routine.

Since our last walk ALS San Diego has continued to provide us with the equipment we need (extra walker, electric hoyer lift, hoyer lift slings, a replacement standup recliner chair, a rolling shower chair, a rubber mat that sits over the transition strip to make it easier to roll equipment from the bathroom to the bedroom, plus so much more).

 

Being a part of ALS San Diego's Walk is the number one way to unite and fundraise for those living with ALS. Please consider supporting my efforts by donating through my fundraising page.

 

Your donation today will help fund resources and services to the local San Diego ALS community (including us), help find new treatments, and move us closer to a world without this disease.

 

Please feel free to send this page to any friend or family member who might be interested in donating!

 

With much gratitude, thank you for your support and kindness as we navigate through this difficult, expensive, challenging disease.