Patty Jean’s Fight against ALS

Dear Family, Friends, Colleagues and Generous Strangers,

It is with a heavy heart that I post this plea today. My mom, Patty Jean, was diagnosed with ALS, Amyotrophic Lateral Sclerosis, also known as Lou Gehrig’s disease, in April of 2023.

ALS is a cruel and terminal disease affecting the motor neurons of the spinal cord, which causes progressive weakness, muscle atrophy, paralysis and eventual respiratory failure.

It’s been a long and arduous journey. After several years with Mom battling muscle cramps, drop foot, multiple falls, and many referrals to numerous physicians for different treatments, it became clear that we weren’t getting the answers we needed. Consequently, we sought and found another specialist who was able to diagnose Mom’s ALS through a serious of clinical examinations, scans, and nerve conduction studies.

As devastating as the diagnosis of ALS is, Mom met it, head on, with her incredible spirit addressing each and every issue. With God’s Grace, she maintains her unrelenting determination to continue enjoying her life with her family and friends. My mom is the personification of grace, strength, and independence. She loves deeply, lives passionately, and she is the most influential person in my life. The ravages of this insidious disease are unrelenting; however, Mom’s indomitable spirit remains strong; she is a phenomenal example to all know and love her.

As unfair as it is, Mom is now at a pivotal point in this journey, where she requires continuous care. This disease has robbed her of her of the ability to perform daily tasks that we all take for granted. She is unable to sit, stand, walk, roll over, or breathe without mechanical assistance which, for now, is about 16 hours out of each day. Mom’s feeding tube was placed this month through which she is now receiving supplemental nutrition. For now, she is able to tolerate some of her favorite foods by mouth but her ability to swallow, without choking, is becoming difficult. Her speech is becoming increasingly labored, and she’ll eventually be using yet another mechanical device to speak.

So much love surrounds Mom from all directions. Family and friends have been very generous with their gifts of love, prayers, time and money for which we are so grateful. However, the financial burdens of the disease are, once again, unrelenting. The cost to care for your loved one with a more advanced stage of ALS is estimated to be around $200,000 per year. Some portions are covered by insurance, but many necessary expenses are not covered, such as home modifications, durable medical equipment, medical supplies, adaptive clothing, supplemental nutrition, ADA accessible transportation, in home nursing care, respite care, and so much more.

By helping support our family with a financial donation toward Mom’s care, you’re giving us the ability to have more time, safe in the fold of family, to protect Mom’s spirit and dignity, more time to hear her infectious laugh, and more time to enjoy the little things that are so precious to her.

Thank you for your kindness, love and support during this most difficult time.

With Heartfelt Gratitude,

Patty, Stephanie and Larry