I hated having to rip out my tapestry. Just when it was starting to look like something nice, I realized that I was heading in the wrong direction.
I had determined that I would volunteer for every Parkinson’s clinical trial and study I was eligible for. But, did I ever make a mistake! It seemed so promising. Researchers wanted to repurpose a drug that had been FDA approved for 30 years for a different illness. They felt certain that this one would remove the folded alpha-synuclein proteins from the blood, which would, if not cure, at least reduce symptoms and slow down the progression of PD.
There was only one big but – I would have to go off of Pramipexole. The warnings had not been exaggerated. Supposedly, Pramipexole is as addicting as Heroin and the withdrawal symptoms as bad. I could not sit still for more than a few minutes; sleep was out of the question. The only relief I got was from epsom salt baths and massages. If that wasn’t bad enough, we also had to make frequent trips down to Denver for blood tests and symptom monitoring.
Supposedly the trial was successful, and yet we have yet to see Phenylbutyrate being used as a PD treatment. So, I guess it’s back to the labs for the white coats.
And back to the tapestry for me. My next threshold would be to try my hand at biking 79 miles in the Copper Triangle, which benefited the Davis Phinney Foundation for Parkinson’s. I figured that if I could sew a tapestry, I could certainly bike over three mountain passes with an elevation gain of nearly 6,000’, the steepest grade being 9.9%. Well, maybe in my dreams.
But I had not trained at all – nada. I had never biked 79 miles all at the same time – not even in the same week. Who was I kidding? Maybe I should just get back to my tapestry. After all, I was well past my ski patrolling and marathon running days and was certainly no spring chick. Little did I know that this action would not clash with my tapestry but instead implement a color and pattern that would definitely complement what had already been sewn.
I started in Minturn, about halfway around the course. I had the privilege of meeting a handful of Team DPF bikers at Vail Pass including Davis himself. This was the beginning of an adventure that would forever change my life and the design of my tapestry. Turns out we have biked the Copper Triangle another five times and been able to raise some funds for DPF.
But the significant takeaway is that Dan and I would both learn so much from the Foundation and be extremely challenged in our walk with Parkinson’s. I have learned there are so many ways that we both can live better than we ever imagined when I was first diagnosed with Parkinson’s.
I’m taking a liking to where my tapestry is heading. Maybe I should start developing my domestic sewing skills at the young age of nearly 70. 😉
Patti Burnett 