Help Keep Priscilla at Home- an ALS fundraiser

June 26th, 2023 update

Hello Everyone,

My name is Beecher Grogan and I am visiting Peter, Pris, and Jessie for a couple of days. Peter and Jessie are out straight every day, just trying to keep up with Priscilla's rigorous daily healthcare regimen, so I wanted to give you an update on how things are going.

Firstly, Peter and Pris want everyone to know how grateful they are for the support and donations they have received.

Unless one has been the full-time caregiver to an adult with a debilitating life-threatening illness, it is impossible to imagine the daily stress and grueling pace that is involved. While it is a labor of love and an honor for Peter and Jessie to tend to Priscilla's needs, it is also physically, mentally, and emotionally draining to bear witness to her suffering, while also providing around-the-clock nursing care.

Priscilla's attitude continues to be extraordinary and hopeful despite disease progression. She applies her steel will to thriving and surviving and finds moments of joy and levity each day. It has been reassuring to be here with them and to witness the love and connection that is palpable in every interaction between Pris and her family.

Pris is no longer able to use her arms or legs and is dependent on others for even the simplest daily life tasks. Her voice is fading and it is difficult to understand her, making essential communication more and more challenging. Imagine a life where you are not able to walk, talk, or even scratch your nose, turn over in bed, or feed yourself. Imagine having to ask for help hundreds of times each day, while worrying that you have become a burden to those you love the most. The house is crowded with medical equipment and tools to help with Priscilla's care. Two people must be here at all times to help with transfers and unexpected emergencies, making it challenging to run errands or take a break.

I know that Pris has a large community of friends and family who love her and want to see her thrive. Pris is receiving excellent care at home, and she attributes her survival to the love and care she receives from her family, her ALS support groups, and all of us.

The family originally hoped to raise enough funds to build an accessible bedroom downstairs for Pris, but have realized that this goal is not attainable. Priscilla's disease has progressed to the point that the family needs to hire home health aides to supplement the care they can provide. Right now, this is the most urgent need.

I know how hard it is for Peter and Pris to ask for help. But the hard truth is that they are going to need our help for as long as the disease persists. I hope that we will all be able to dig deep and donate generously so that Pris can have the help she needs at home. For every $30 we donate, we provide one hour of comfort and quality of life for Pris.

If you are not able to donate at this time, perhaps you can share the link to this GoFundMe page along with a personal note about who Priscilla is to you. Other helpful things local friends can do to contribute are dog walking and meal delivery- if you can help with these things, please leave a message below!

Thank you so much for all you have already done. Your love and support mean everything to Pris.

Original post- Summer of 2022:

My beautiful bride of 52 years, Priscilla, was given the devastating diagnosis of ALS, or Lou Gherig’s disease in the spring of 2019.

 

ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. According to als.org, “When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. When voluntary muscle action is progressively affected, people may lose the ability to speak, eat, move, and breathe.” Most of us take simple daily tasks for granted, such as getting out of bed, brushing our teeth, drinking water, and speaking- as ALS progresses, each task becomes impossible.

 

Pris is a lifelong athlete, healthy eater and yoga practitioner, so our family was stunned when the fittest person in our family was stricken with an incurable disease. While the ice bucket challenge of 2014 raised awareness and funds for the disease, there is still no cure for ALS and no clear path forward for ALS patients. Priscilla is participating in a clinical trial and is desperately searching for ways to turn the tide of this terrifying illness.

 

Priscilla is the beloved mother of 3 adult children and devoted grandmother to 3 beautiful grandchildren and one sweet kitten, Rumi.

 

Today, Priscilla uses a wheelchair and needs 24-hour supervision and assistance with the simplest tasks. Her body is slowly failing despite her vigilant efforts to maintain muscle mass and flexibility.

 

It is tough for me to ask for help this way, but I know that over the next year or two, ALS will continue to rob Pris of the tiny bits of independence she still has. Over time, she will lose the ability to drink. She will lose her ability to eat, and eventually, she will lose her ability to speak.

 

Priscilla’s greatest wish is to remain in the love and comfort of her home, no matter the disease's trajectory, and to be cared for by our children and myself. Our home is not wheelchair accessible, and our makeshift bedroom on the first floor is much too cramped for the many medical devices that Pris requires to get through each day.

 

We have already added a wheelchair-accessible bathroom to the first floor. Now, the most urgent need is a new bedroom that will be spacious enough to accommodate the medical equipment Pris will require as this insidious disease progresses. We need to raise $100,000 to build the addition for her bedroom, buy adaptive equipment, and provide supportive care at home that is not covered by insurance or Medicaire.

 

Priscilla is so brave, and her attitude is extraordinary. She maintains her sense of humor and holds onto hope despite everything she knows about the disease. Each day she pushes herself with the discipline of a soldier to adhere to every single holistic protocol that could slow the progression of the disease.

 

Please help by donating what you can or sharing our GoFundMe story on social media or by email. Every little bit helps and will go a long way in providing Pris with the support and quality of life she deserves. Thank you for your love, friendship, and support. It means more to us than you will ever know.

 

With love and thanks,

Peter Wolf

Lakeville, CT