Excerpt of email sent from LBWP Director Jim Karn
Subject: Stepping Down, but using “Every Victory Counts” (EVC), etc., to work with PD Support Group to customize and tweak individual Daily PD Management Plans
Recognizing that Joanne and I have been forced to spend more energy in our personal battles with PD, we want to focus on where we can best help our fellow Parkies and indomitable caregivers. Joanne has stated a desire to keep participating in a mentor type role to help our Support Group any way she can, and my objective is to refocus my efforts on listening to and learning from the best resources we can access, to help individuals customize Daily Plans to manage and live with their PD.
Thus, although functionally we have already passed the torch to Cathy’s leadership, and Andrew’s commitment as a LBWP Director and facilitator with our PD Support Group, I believe it is time for me and Joanne to officially step down as facilitators (with Parkinson Canada) of our local PD Support Group, and officially pass the torch to Cathy and Andrew.
My refocus will be on combining three steps; Tim Hogue’s ME approach, Dr Bloem recognizing that each individual needs to personalize their own plan, and sharing your plan with others. As such, after listening to him speak to our Support Group, there has been positive feedback re his “ME” approach to PD Plans. Focusing on ME first also positions us to act on Dr Bas Bloem’s message in the EVC Forward, where he says there are “seven million different Parkinson’s in the world so we must move from one-size fits all treatment plans to personalized daily care plans for each individual, and there’s no right way, just the way that works for you”.
For example, my attached Daily PD Lifestyle Plan puts a cap on 8 Levodopa pills a day in order to prevent “Medication-induced Dyskinesia” (EVC, Chapter 7), and tries to compensate for not increasing pill intake by using exercise, therapy, diet, etc., tips from EVC, and other sources, to customize a Daily PD management Plan that can be self-assessed and tweaked re what works and doesn’t work. Individual plans will cover a wide range of needs and wants from technical intrusive DBS surgery, to basic non invasive plans like mine, that can be shared with our fellow Parkies.
This said, to best customize “ME” plans we need access to the best resources available, and in our case Parkinson Canada (PC) offers better access to these resources to explore the most current info available and get the best answers for tweaking plans. Additionally, the quality speakers and presentations Cathy arranges for us with individuals like Tim, Candace Cox (Alexander Technique), Dr Lidstone, plus our own experiences to date, will help us personalize and share individual plans with our fellow Parkies.
Jim Karn’s Daily PD Lifestyle Routine and Plan for managing his Parkinson’s Disease: Feb15, 2023
Understanding that every individual with PD must develop their own daily plan for medication and physical and mental activities, including eating, sleeping and hygiene that they are comfortable with, can-do, and can tweak to adjust as their life evolves, the below plan works best for me, 7 days a week.
- 6-7 AM: Wake up and do standard bathroom activities, drink water+, take 1 Azilect 1mg pill, minor stretching, hopefully have bowel movement. Take 2 APO-Levocarb 100 & 25mg tablets with 1 soda cracker and sparkling water @ 7. Shave every 3-4 days.
Note: Disabling morning foot cramping problem reduced since taking magnesium and drinking more water every day.
- 7 AM-8:30: Get Coffee going, turn on computer to check news, weather, sports and reply to or work on Parkinson’s Support Group emails. Hug my wife when she gets up, and after 7:30 eat bowl of Kellogg’s All Bran Buds to prevent constipation, and maybe have toast & peanut butter.
- 8:30-8:45: Mon, Wed, and Fri; get ready to go to gym for 1-hour (9-10) PD workout learned from Dr. Quincy Almeida at WLU’s Movement Disorder Centre. My wife usually joins me but does her own exercises. On off workout days do light stretching, ball squeezing, and if possible, walking, and try to interact in a social activity to get my mind off my PD.
- 11:00 AM: Take 2 APO-Levocarb tablets with soda cracker washed down with sparkling water.
- 12-2:45 PMish: Have lunch about 12PM, usually a meat sandwich for protein and energy drink, take 1 magnesium pill, and try to relax, read, and maybe get emails out, or have nap if tired. Also try to do things during the day to distract me from a constant focus on PD.
- 3:00 PM: Take 2 APO-Levocarb tablets with soda cracker and sparkling water.
- 7:00 PM: Take 2 APO-Levocarb tablets with cracker and sparkling water.
- 7:45: Eat healthy dinner.
- 9:30 PM: Brush teeth thoroughly, while I still have mobility, and take 2, 100 mg magnesium bisglycinate (Mag Glycinate) as per nutritionist to help prevent foot cramps. Also rinse mouth with antiseptic mouthwash for better oral hygiene and to dry out my mouth for sleeping.
- 10:30 pm: Take a bedtime .5mg Clonazepam to relax for sleep
Review Dystonia + Dyskinesia with Neurologist:
Taking Mag Glycinate reduces foot cramping and helps bowel movements, and using Alexander Technique to stretch/rub toes also alleviates cramps. Discuss preventing medication induced Dyskinesia by limiting Levodopa to 8 pills/day + compensating for pill cap by improving pill absorption, diet, exercise and learning from sources like “Every Victory Counts”, the Alexander Tech, etc, to improve movement. Also review use of Clonazepam related to Dystonia.