Many of you continuously share your kindness and support by inquiring about my husband Juan and his struggles with ALS. Dealing with ALS and a pandemic has been difficult, but the blessings of your thoughts are motivators to not give up and remember the joy of being alive.
Since Juan was diagnosed with ALS in April 2019 the disease has progressed, but in the past two months the advance of his symptoms has been swift and taken us by surprise. Juan has now lost complete mobility of his arms and can barely move his fingers across a computer pad. He needs the help of another person to eat, to dress/undress him, and care for all his adaptive/personal care needs. We are saddened to report Juan is completely homebound and walks gingerly within our home, always with appropriate supervision to ensure he doesn’t fall since his legs are weak. Juan can swallow his food and breathe on his own, but he must pace himself when speaking, since his sternum weakens when speaking for a long time.
Despite these limitations, Juan’s passion for teaching chess never dwindles. Juan continues to teach, though his condition limits him to a couple of hours a day a couple days per week. An additional challenge for our family is that because of the pandemic putting a freeze on case processing, there has been a delay in resolving his immigration status which would allow for Juan to receive extensive support for his care. We rely on health insurance support through my job which doesn’t cover home-aide care.
All home-aide care, as well as other adaptive care expenses (e.g. special bath equipment, etc.) comes out of pocket. As his wife I am blessed to work full time and provide for his care and our teenager daughter’s needs, while at the same time being his full-time caregiver. Juan deserves the best of care, but so far, we can only afford a couple of hours of outside assistance per day. It would provide immense relief to our family to be able to afford more caretaker help.
I am humbly asking each of you to help me help my husband, my friend, the man who has loved me and our daughter without measure and with total dedication. My biggest wish is for my husband to remain at home, surrounded by love, and given care filled with dignity and compassion. With your support, we can make this happen for him.
Please accept our gratitude for your understanding of our circumstances.
With humbled love,
The Sena-Baalla Family
- Jamie Frank
- Peter Strugatz
- Paul Fine
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New York, NY
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