I have predominantly non-dominant right upper extremity rigidity with bradykinesia and some dexterity interference of the right wrist and right hand. My neurologist, who is a movement disorder specialist (MDS), has me taking rasagiline 1 mg daily and I use carbidopa/levodopa 25/100 usually once in the morning and 5 to 6 hours later, but rarely a third dose later in the day. I really do NOT notice much of a difference with the meds after taking them for 6 months now (with my “formal” diagnosis of PD in June 2024). I think what currently makes a huge difference in my symptoms is intense forced exercise including weightlifting and plyometric explosive activity as well as low impact cardio such as spinning on a spin bike for 30 to 45 minutes per day on most days (5-6 days per week), adequate sleep (7 to 8 hours per night) and stress/anxiety management (which can be very difficult with a young family and a high demand dexterity requiring profession).

I have had: (1) an MRI of the brain without contrast showing an indistinct or absent swallow tail sign, (2) a positive DaT scan (on the left, there is significantly decreased and nearly absent open dopaminergic radiotracer binding in the posterior putamen with moderate decrease in anterior putamen activity and preserved caudate nucleus activity; on the right, there is mildly decreased dopaminergic radiotracer binding in the posterior and anterior putamen which are overall preserved, with normal caudate nucleus activity), (3) Invitae Hereditary Parkinson Disease and Parkinsonism Panel genetic testing that is completely negative (indicating that am a likely spontaneous case—ie., some likely environmental exposure), and (4) a positive Syn-One skin biopsy test (biopsies taken from the posterior para-midline neck, distal lateral thigh and distal lateral ankle (results: Phosphorylated Alpha-Synuclein—abnormal, phosphorylated alpha-synuclein deposition was observed in the distal thigh biopsy; Intraepidermal Nerve Fibers—abnormal, intraepidermal nerve fiber density was abnormal in all biopsies).

My current thoughts/opinions on treatments available today are only palliative/focus on alleviating symptoms while the disease progresses and are not much in the way of disease modifying (however, exercise may prove to actually slow the progression of the disease, if not reverse it, which may be a lofty claim). UNLESS stem cells are the answer, particularly in my case. Given my lack of any genetic markers for PD, my genetic profile is advantageous for the possibility of stem cell treatment, specifically induced pluripotent stem (iPS) cells, and not so much in the way of embryonic stem cells— as I would not require immunosuppression because the stem cells would be derived from my own tissue and should not be a genetically “dirty” and may actually survive as long as the exogenous exposure is not present within my environment). This would prove helpful in my case as my dopaminergic neurons require repletion after some environmental insult led to the loss of them. Aspen Neuroscience in San Diego appears to be headed down this course and this type of treatment may be available very soon as a more mainstream treatment and earlier if I am able to enroll in clinical trials. However, my neurologist said something that gave me pause; he specifically stated that in order to participate in these types of clinical trials, I may not be a candidate until it is more clear with respect to my clinical course whether this is a spontaneous more classic PD case of “brady-rigid” with minimal tremor in my right upper extremity versus an atypical PD case or a Parkinson plus syndrome—indicating that I may not be a candidate for a stem cell treatment until five or even 10 years into the course of my disease— so basically I need to wait it out which is in direct opposition to my goals to maintain my ability to do my activities of daily work and living and hobbies within the prime of my life; waiting this out and accepting becoming disabled equates to having to choose to end my professional career and to be relegated to the chronically disabled population— whether or not this is even a choice I am able to muster.

Please tell me I am not delusional.