Last Dance with Jo. ALS Challenge

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Last Dance with Jo. ALS Challenge

I apologize in advance for the length of this post, but it is long overdue and incredibly important. Those of you who know me well, know that I am a private person—quiet, no—but private, yes. I try to see the good in all things and all people whenever life has anything negative to throw my way. Well, life has thrown my family a sly, fast, curve-ball.


Many of you may know that my mom, the strongest woman I know, beat cancer last year. She carries the BRCA gene, so we went all out on the treatment, and the doctors cleared everything out. In the fall of last year, when she should have shown marked improvement, she wasn’t. She seemed to be hitting a brick wall with her recovery.


As fall turned into winter, we noticed some additional subtle changes. Her speech was starting to slur and her movements were becoming stiff and uncoordinated. Concerned she might be having a stroke or heart problems; we took her in to be thoroughly examined. Two days before Christmas, heart attack and stroke were off the table, but her health was still rapidly declining.


Her team of specialists started testing her for degenerative nerve and muscle disorders. While we waited, and tested, throughout January into February, we watched my mom shrivel to a shadow of her former self. On Valentine’s Day, we got the final diagnosis: ALS. This outspoken, proud, strong woman beat cancer only to be stuck down again by ALS. We were devastated.


Over the last 6 weeks, she has dropped over 50 pounds, has little to no ability to communicate verbally, has difficulty eating solid foods and had trouble clearing her own airway fluid—she cannot say “ahem” to clear her throat. She will be going in soon to have a feeding tube inserted. It breaks our hearts.


My father still works full time, because he has to, in addition to caring for her. She is his life. I saw him cry for the first time in my life two months ago when he asked me, “What am I going to do without her?”


Her time with us may be limited, but that doesn’t mean it cannot be meaningful. I want to make this as easy on my dad as possible. Treatment is expensive; my dad has bills to pay, a house to maintain, and a terminally ill wife to care for. I want to give him time to spend with her. I don’t want him to have to spend a moment of her remaining days away from her side. He has to work in order to pay bills but his time should be with his soulmate and not worrying about paying bills.


No one should have to make that choice!

In honor of my parents, I will be setting up an online fundraiser account to help get my dad through these difficult days without worrying about finances. I have my mom’s permission to tell you all about her health condition, but she doesn’t know what I have planned.


Please consider helping out. I will post more details if you are interested. Thanks for your thoughts and prayers.
Betty

Organizer

Betty Holub
Organizer
Haverhill, MA
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