Help Darlene receive new Parkinson's treatment

Hello world! My name is Amanda and I am fundraising for my momma, Darlene Schmick.

Mom spent a lifetime of being active and lifting over a hundred pounds on a daily basis like it was nothin'. Growing up, I can remember admiring her climbing on the roof to hang Christmas lights with ease and even coming home with huge pieces of furniture she found on the side of the road to rehab and give new life. She showed myself and many others just how "easy" it was to be a independent and strong mom.

But the last couple years have demonstrated just how quickly life can revoke the very abilities that we relied on for so long.

In April 2019, I attended a neurology appointment with my mom where she was definitively diagnosed with Parkinson's disease even with just mild presenting symptoms. At the time, she was brave in the face of the new clinical label and assured that there were a string of options in slowing the progression of the disease.

Since then, mom has tried every pharmaceutical imaginable. Not only has she had to completely plan her daily life around side effects, but she has had to do this while being a front row spectator to the inefficacy of each and every attempted drug. She took on physical therapy courses, speech therapy courses, Parkinsons-centered gym programs, and even boxing courses. She has attempted every suggested elimination diet and holistic recommendation.

In sum, she has not given up. And this is no surprise as I would say that is the one thing that my little brother, Tyler, and I have never witnessed of her.

Her doctor-recommended options have run out and her condition has progressed to stage 4 Parkinsons. She requires assistance in daily tasks that most others complete without thought. Needing help is not something she has ever been comfortable with admitting. But at this point, her mobility and safety is dependent upon assistive devices and those in close proximity to her throughout the day.

She has scars, bumps, bruises, and even fractures from falls. But what did she do two weeks ago? She still allowed Tyler to take her hand and carefully guide her to the dance floor for the mother-son dance at his wedding. No cane, no walker, and hopefully without shame.

She doesn't know this, but in those moments, I nearly fell to the ground and then into a chair with tears. I was consoled by family I hadn't seen since I was a teenager and even her old friends I hadn't seen since elementary years. I was told to mend any difficulties she and I may have had in the past because to them, it appeared that time was of the essence.

And they were and are right. Time is of the essence. My mom has two young grandsons, a new daughter in-law, and likely a whole beautiful flock more of grandbabies that she deserves to not only see grow up but that she also deserves to be able to even just physically HOLD.

By U.S. medical standards, she has done everything right and then some yet she continues to lose another chunk of independence each day.

She has an opportunity to receive an experimental treatment in the British Virgin Islands very early next year. Hours of research, discussion, journal reviews, and investigation have been completed. This treatment is intranasally administered FGF-1. There are about 80 other patients who have already received this treatment over the last year and are experiencing between 18% and 90% improvement in their motor skills at even just the three-month mark. The main risk is the unknown possibility of very longterm ill-effects.

FGF1 promotes the survival of neurons

We were almost certain it was a scam, but with further inspection, it's not a scam - there's just inherent risk. And while Tyler and I were incredibly skeptical of this risk, when we place ourselves in my mom's cute lil shoes.. the thought process always ends with "why not?"

The biggest drawback, however, is the price-tag for the drug itself. Because they will not yet reach clinical study status and therefore have funding until perhaps a couple years from now, this is n out-of-pocket expense at this time.

Mom will not give up. The cost is daunting, but quitting before trying everything to prevail is even scarier.