In this forum, I find that I am always comparing what everyone else is taking as far as medication, supplements, exercise and diet. I think this is such a good forum for sharing of information and our experiences with this disease that we are enduring. I think it would be a good concept to share more details about what a day is like for us that we are experiencing, what works for us and things that we have tried and did not work for us as well. I know many of you have listed your regimen in your profile already, which is great, but I thought that it would be a good idea to take the time to add even more details that we can list in our profiles to better view commonalities and get insight from each other and give back advice. So I came up with a template to do this with as a starting point, which we can add more features to. I welcome any suggestions to enhance this idea further...
Birth Year: 1968
Weight: 170 lbs
PD since: 2014
Side affected: 90% right side
Dominant side (previous to PD): Right side
Rigidity, slow movement, cog-wheel arm and neck movement, freezing up, gait/shuffling, balance issues, right hand finger dexterity, fatigue (especially as the day progresses), dystonia (mostly in foot and leg). Sleep not very deep and I wake up often. Voice strength varies from strong to weak.
Minor or non existing symptoms:
Only slight occasional tremor and no dyskinesia, but I shake strongly only when I stretch my arms and legs out or yawn. If I do get too cold, I shiver easily. In fact, my tremor has that same vibration generally. I can smell, but often can smell musky odor in my nose. Facial features not affected. Cognition good.
Other non PD health issues:
Tinnitus in left ear since 1990 car battery explosion with resulting left shoulder stress/trauma clenching, breathing not deeply, nasal passage blockages, sciatic nerve on lower back and right hip, teeth grinding, toenail fungus (mainly right foot), cataracts, hernia groin operation (2016)
Possible reasons you believe you have PD:
Car battery explosion trauma and resulting left ear tinnitus could have caused a left/right hemispherical imbalance in me, resulting in poor tongue placement and breathing pattern (lack of optimum oxygen intake). I felt like my left side was partly dead or weak. Now it is my right side that I have my PD and have forced my left side to function more on a basic level. I did not sleep enough in the past and worked too much (4 to 6 hours sleep before). Possible exposure to pesticides near my workplace. My daughters both have PKU (Phenylketonuria), so I may have some hereditary predisposition to getting PD.
Carbi-Levadopa (April 2017 to current) - 1 tablet, 3 times daily of 25/100 Sinemet (generic form by Mayne Pharma)
Mirapex (Jan to Feb 2017) - did not respond, concerned about side effects
Thiamine HCL (Feb 2017 to current) - 100 mg intramuscular injections, 2 times per week
B complex multivitamin taken at the same time of Thiamine injections composed of...
Vit B3 (Niacinamide) - 100 mg
Vit B5 (D-Calcium Pantothenate) - 50 mg
Vit B2 (Riboflavin-5-Phosphate) - 30 mg
Vit B1 (Thiamine Mononitrate) - 30 mg
Vit B6 (Pyridoxal-5-Phosphate) -20 mg
Vit B7 (Biotin) - 300 mcg
Vit B12 (Methylcobalamin) - 20 mcg
Folinic Acid - 8 tablets x 800 mcg "Megafolinic" from Source Naturals
CBD oil (Jan 2017 to current) - 0.6 ml per day from Stanley Brothers "Charlotte's Web" - I use it occasionally, but if I use regularly, seems ineffective after third daily dose
Restore Gold (May 2016 to Sept 2016) - no perceived effect
Ibogaine (Jan 2017) - minor response, but experienced worrisome visual trails of lights (mainly at night)
Diet: Vegetarian diet from 1990 to 2010, introduced fish in diet since 2010, both I am still mostly vegetarian. I do eat probably too many fried and processed restaurant foods and dairy, but do eat mostly organic foods when possible.
Water intake: Have not drunken enough water over the last ten plus years as I should have. Now enjoy mineral water. Live on a well with a filter system.
Alcohol: Drink alcohol occasionally but not daily.
Smoking: No tobacco.
Coffee and/or caffeine: Occasional (once a week)
Drug use: Used to smoke marijuana in the 1980's and mid 1990's, now only rarely. Took LSD and mushrooms about 40 to 50 times in the same time period.
Exercise: I still work a job. General walking, but have not exercised enough really. Can still ski very well down expert slopes.
7:30 am - wake up
8:00 am - take Carbi-Levadopa
8:30 am - bring kids to school
8:45 am - have breakfast (usually a juice and oatmeal, yogurt and or omelet)
9:00 am - at work
11:30 am - notice the Levadopa wearing off, becoming difficult to type on keyboard
1:00 pm - take Carbi-Levadopa again
2:00 pm - have lunch (soup or sandwich)
2:30 pm - can feel Levadopa and can type again for about 30 mins to one hour again.
4:00 pm - finish work (pretty much useless for work at this point)
5:30 pm - get home to relax (dystonia kicks in...literally!)
6:00 pm - take Carbi-Levadopa a third time
6:30 pm - feel relief from Dystonia, play/work/research on computer or watch TV
7:30 pm - eat dinner (usually one of the following: pasta, rice and veggies with fish or tofu, soup, tacos, pizza, salad)
8:00 pm - chores, clean up, etc.
9:30 pm - kids to sleep
10:00 pm - TV or computer reading (like this website...lol)
11:30 pm - sleep (which is not very sound, but apparently I do sleep enough to have a recharge of energy and less symptoms in the morning more so than any other part of the day)
Supplements and/or medication interactions noticed:
Advise on food, medication, supplement combining and optimal timing:
I try to avoid
protein with Levadopa.
I take my Thiamine and B vitamins Monday and Friday at lunchtime or dinner.
For me, this disease is such a trick on your mind, literally and figuratively. It is hard to know whether tomorrow will be a better day or worse. The timing on the Levadopa, food, supplements, sleep, activities and the unpredictable stresses of the day ahead make this a rollercoaster ride. It is hard for me to know what is helping most, as it feels overall that I do not respond so much to anything all that much, but feel like overall I holding my ground somewhat.
Thank you all for being here to help each other along. Together we can help each other stay strong.
All the best,