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Hello friends,

As many of you know, my mother suffers from advanced Parkinson’s Disease and dementia and I fly to Wisconsin to visit her every month. I moved back there to help care for her in her home for two years, relying heavily on education and programming organized by the Wisconsin Parkinson’s Association. Her conditioned worsened to the point that in late 2023, it was no longer safe for her to stay at home. We moved her to a memory care unit in a nursing home, and the care is abysmal.

April is Parkinson’s Awareness Month, and for the third year in a row, I’ll be granting one year of free access to my paid newsletter to anyone who donates at least $50 to Parkinson ’s-related organizations during April, when many orgs have matching grants. I usually charge $70/year so you even get a discount, how about that? If you’d like your entire company to get an agency-wide deal, please let me know.

Because April is Parkinson’s Awareness Month, I’m taking this opportunity to tell you a bit about this horrible disease and why I’d like you to donate.

My family’s story

My mom first began developing symptoms about 12 years ago, but it wasn’t until a series of falls 4 years ago that her mobility was significantly and permanently impaired. Overnight, my sister and I became her full-time caregivers. My sister moved her family in with my mom, and I relocated across the country for two years to help with the transition.

My mother met my father (who died of a heart attack in 1990) in music school, so music and song were a huge part of my childhood. My mother was a trained pianist, church choir director, and school musical coordinator who can no longer play. Three years ago, we sold her prized baby grand piano to pay for her care. She had the loudest and most beautiful voice in church and was often recruited to sing for weddings and funerals, yet she can no longer sing and she speaks in a stuttered, monotone whisper. She was the president of her Mensa chapter and now struggles through simple conversations. She organized monthly games parties with Mensa, and now gets confused by Go Fish. She biked and jogged at the track near our house, and danced to the always-amazing Rick Astley, but she now requires a wheelchair. She was a CPA accountant, but I’ve had to pay her bills and file her taxes for years.

Last year, my heart was broken again when my little brother suddenly died. It’s been one year since his death and I still cry every day. I’m crying as I type this. Breaking the news to my mom was one of the most difficult things I’ve ever done. To make matters worse, when I picked her up from the funeral, she forgot where we were going so I had to break the news from scratch all over again. This past Christmas, she again asked about my brother.

My mother needs help getting up, getting dressed, moving around, bathing, eating, drinking, brushing her teeth, and taking her medication. Many people suffering from advanced Parkinson’s Disease develop what’s referred to as Parkinson’s-related dementia, and four years ago, my mom started experiencing hallucinations. She saw children crawling on the floor and a man with scissors-like hands sneaking into her bedroom. When I took her on vacation to northern Wisconsin last year, she woke up in the middle of the night ringing her buzzer because she had “seen” a man in her room threatning to rape me. She felt completely helpless, unable to get out of bed and help me. All she could do was ring her buzzer.

The only medications that can improve dementia also make Parkinson’s movement challenges worse. The meds that improve mobility challenges and stiffness make the hallucinations worse. It’s a scary and frustrating experience for my mom, and it’s thoroughly exhausting for those of us caring for her. After another hospitaliziation last year, she needed to be transferred to a memory care nursing home. Some aides are great, but the home is understaffed, and aides rotate in and out so my mother doesn’t receive the help and attention she needs. They don’t feed her enough and she now weighs 92 pounds.

Watching my mother’s mental and physical health decline has been extraordinarily painful, and I hope I see a cure for the disease in my life because I know she won’t.

My family has relied heavily on resources provided by several Parkinson’s groups, which host free online and in-person fitness classes and Q&A webinars with PD specialists who answer the questions we often haven’t even thought of.

How to Donate

In order to take advantage of this April promo, I’m going to ask you to donate at least $50 directly to any Parkinson’s charity. Here are two I like. The first is a national organization, the second is the one my family has specifically relied on.

The American Parkinson’s Disease Association

Wisconsin Parkinson’s Association

Once you’ve donated, please forward a confirmation of your donation to cassandra@escapingny.com.

You can also send the money to my Venmo, which I’ll forward on along.

Next, do me a solid and forward this post to colleagues and friends and share it on social media and tag everyone you know so we can raise even more money for Parkinson’s.

Would it be easier if you just paid $50 directly to Substack? Yes, it would probably be easier for you and it definitely would have been easier for me since now I’ll have to go and manually add in the hundreds of free subscribers who I know will donate. :) However, if you pay Substack, they (and the Stripe credit card processor) will take about a 30% cut and that’s lame. Sure, everyone needs to make a buck, but I’d rather see your money go to actually help someone suffering from PD instead of lining someone else’s pockets.

If you upgrade through Substack and pay the $70 there, and I’ll donate $50 of it to charity to account for fees.