Normally associated with other issues, the MAPT variation can mimic Parkinson's.    Info:  NIH PD Overview   NIH MAPT Info   

I had retired before my diagnosis, so I didn't have to deal with my boss or employees.  My left side is impacted more than my right.  I am “slow” at times, but movement issues are almost controlled with meds, exercise, and “mental retraining”:

• Fatigue and apathy are common “non-motor symptoms”, C/L minimizes them.

• Stretching and simple exercises, every morning, to smooth out functions

• Working on mentally retraining the leg and foot 

• Minimizing the risk of injury by being careful on rocky trails, not jumping out of the pickup, etc 

• Keeping active, doing things that are of interest to you 

Lost my sense of smell several years before having classic PD symptoms. 

Found a good Movement Disorder Specialist – started meds with Azilect, not Levodopa, and slowly added:

• Ropinirole, a dopamine agonist, smaller dose 2x daily instead of a large dose 1x daily (smooths out the “dose curve”).

• Carbidopa/Levodopa (C/L) 25/100, ramping up from ½ pill 3x daily to 1 pill 7x daily 

• Late 2023, my Neuro took me off of Azelect and Ropinerole, then added Ongentys to "smooth" the availability of the levodopa.  

• As of March 2024, I was taking 8 to 10 C/L 25/100 a day, 3 C/L slow release, plus Ropinerole (one 2mg), and 2 two Entacapone.

• Had issues with Ongentys and Entacapone 

• Neuro shifted me to Rytary -- start the day with 2 Rytary 48/195; 2 more in 3 hr; then back off to 1R48/195 & 1R25/95 at6 and 9 hr

I believe in the concept of neuroplasticity, the ability to develop alternative “pathways” to recover/smooth out movements.  Sounds funny – but I often “talk to” my left leg to recover smooth movement.  (Dr G, neuroplasticity)

Anchor on the slow side -- it may seem counterintuitive, but using the slow leg/arm as the anchor, allows you to respond with the good leg/arm. 

Participating in research projects, as a subject, can provide one with an understanding of how they approach PD.

• PARS -- tracking early indicators of PD -- Link to pub 1   pdf of pub 2  

• Fox/23andme genetics study

• Walking and balance study

• Wearable technology study

The PARS included collecting a lot of supportive information.  I got to the point that I could sleep when they measured the I-123 in my brain; visualize a grocery store when asked me to name as many kinds of fruit as I could (they allowed names of varieties of apples, not just apples vs oranges); to count backward by "7s" while completing a physical task; etc.

Am an introvert (if you believe Myers-Briggs), I was a senior manager and wanted to moderate social interactions in retirement.  Also, the senior/rec center reminded me of high school--not a positive thing.  

A couple of good physical therapists (PTs) helped me set up a morning routine and refine it:

• Take C/L and wait 20 min

• Basic range of motion, stretching, etc. exercises

• “Pacing in place” to smooth out walking

• Half-mile walk thru our neighborhood 

• Add selected "big" movements 

The same things don't work for everyone -- Find what works for you. 

• Many people with PD find music or dance beneficial.  I would find it difficult, as I would have to "think through" the music, then "talk to" my legs and feet to get them to move. The "brain energy" needed would be unreal.

• In contrast, my approach to controlling tremors and relaxing wouldn't work for most people.  I was on the pistol team in college; an hour at the range allows me to focus on mental/physical techniques.  As PD  tremors are usually "resting tremors", holding/doing something may control them.

Health and risk management -- My main problem has been other issues superimposed on top of Parkinson’s.   

 --- Stay healthy and avoid injuries. ---