Diagnosed early phase Parkinson on 1.8.’19 at age 77 [born 1941], rated one year later [on 3.’19] at 15/100 on the Parkinson UPDRS scale; started 3.12.’19 on Dr Costantini’s High Dose Thiamine, vitamin B1 hcl supplement, 500mg/day, a fraction [12-25%] of the 2-4g typical dosage; self-prescribed and self-monitored during Dr Costantini’s convalescence.
MarcP
[aka Pa-zzi69 accidentally assigned to me at healthunlocked registration, hoping I'm not usurping somebody's identity, yet fitting since I happen to be a paparazzi-style amateur photographer]
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Pa-zzi69
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Welcome MarcP! You have a great smile and kind eyes. This site has been a life saver for me...learning from others who are positive and knowledgeable! I hope you find it to be helpful as well. All the best as you navigate the waters.
Have been symptomatic for about 6 yrs. Definitive diagnosis w DATScan about 4 yrs ago. Have self medicated with mix of supplements, intensive exercise, and deep massage & Feldencrais bi-weekly sessions.
About 6 mos ago, I added the minimum daily dose of Senimet (10/100) after learning that this drug has lasting effect. Was like pouring finely distilled oil into a rusty crankcase! Feel close to normal most days now. Just came in from a pitch and catch football session with my grandson.
Am also mimicking a NAC stage 3 trial being orchestrated by Mass General/Harvard Med.
And am watching a “young plasma infusion” trial at Stanford University.
Yes to Q1. I was under the impression initially that Sinemet had a limited life span, so I delayed starting it. But my Neuro later advised me that delaying had no benefit. It’s effect (with initial 10/100 dose 3 x day) was immediately and demonstrably positive.
I still keep up my exercise routine. Usually, intensive routine exercise session (fast walking, upper body resistance tng, and rowing) 4 x week, other days dog walking to give my muscles a rest.
You will find Feldencrais in the literature on brain neuroplasticity. Replenishing movement neurons and systematically stretching. 2 x month.
Deep massage 2 x month is essential to stimulate all movement muscles and to maintain your flexibility status. Re-syncs all of your movement muscles. Makes me feel more integrated.
On the supplement side, I still taken CoQ10 800 mg and Magnesium Glycinate 400 mg (muscle cramps), PermaClear 3 caps x day (gut health), Skull Cap 400 mg x day (energy), Zinc Picoinate 50 mg and MethylCpG 1cap x day (general PD recom from a practicing MD who has had PD for over 20 yrs.), and Cylobenzaprine 5mg 2 x day (anxiety).
I also mimic the Harvard/Mass Gen 3-yr, stage 3 PD trial for NAC 2400 mg x day. Didn’t want to get caught up in a control group for this double blind study, which is entering its third yr.
For constipation, I take 1-2 doses of Colace 100 mg and Miralax per day.
And for insomnia, I take (in order before retiring) the followijng: 1.Advil PM, 1 Melatonin, and a sliver of Ambien (<5mg), which I place under my tongue before swallowing. If I feel pretty drozy I skip the third step.
I have given up having 2 x month blood infusions of NAC and “Meyers Cocktail” — a vitamin blast used by prof athletes to rejuvenate after competition.
Obtain a copy of John Pepper’s REVERSING PARKINSONS book. His web site is same name as his book.
With all of these, I lead a near normal life with PD. My motto remains, “I have PD, but PD does not have me.”
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Book - “Parkinson’s and the B1 Therapy”
Interview of Daphne Bryan following the publication of her book: “Parkinson’s and the B1 therapy”.
Taking a break from HD B1
Another Study Finds A Link Between Covid-19 and Parkinson's Disease 
A good heart has stopped beating ; Dr Antonio Costantini died of COVID-19
