A call to upgrade our profiles to help understand each other better

[RedwoodPark]

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

Sex: Male

Height: 5'10"

Weight: 170 lbs

PD since: 2014

Side affected: 90% right side

Dominant side (previous to PD): Right side

Main symptoms:

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.

Current Medications:

Carbi-Levadopa (April 2017 to current) - 1 tablet, 3 times daily of 25/100 Sinemet (generic form by Mayne Pharma)

​

Medications Discontinued:

Mirapex (Jan to Feb 2017) - did not respond, concerned about side effects

Current Supplements:

Thiamine HCL (Feb 2017 to current) - 100 mg intramuscular injections, 2 times per week

Custom

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

Supplements Discontinued:

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.

Daily Schedule:

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:

None 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.

Additional Comments:

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,

Trent

[hanifab23]

interesting why so much folonic acid

[RedwoodPark in reply to hanifab23]

That was the recommended dosage by Dr Constantini of 7.5 mg when taking thiamine injections

[park_bear in reply to RedwoodPark]

Do you have any link to this recommendation? Couldn't find. Did find: "We show that an FiA [folinic acid]-enriched diet begun at early to middle stages of adulthood prevents the degeneration of dopaminergic neurons observed in pink1 mutants." sciencematters.io/articles/...

Also 20 drops of this will get 8 mg: amazon.com/Designs-Health-N...

[RedwoodPark in reply to park_bear]

I don't have any link. When I was emailing back and forth with Dr. Constantini last year, he said to take two tablets of "Becozyme" (the B complex vitamin) and "Lederfolin" (the folinic acid). Since these supplements are only distributed in Italy, I had a company in Canada named Vitamin Lab, custom make me the equivalent B complex and am using Source Naturals for the folinic acid equivalent.

[RedwoodPark in reply to park_bear]

This brand seems like a possibly better and cheaper choice. Thanks!

[park_bear in reply to RedwoodPark]

Found good deal on it at iherb: iherb.com/pr/California-Gol...

[M1tz1 in reply to park_bear]

Forgive my ignorance but what is a FiA-enriched diet?

[park_bear in reply to M1tz1]

Folinic acid. Updated my comment accordingly.

[M1tz1 in reply to park_bear]

Thank you park_bear. And what's the relation (if any) to folic acid?

[park_bear in reply to M1tz1]

"the conversion of FA[folic acid] to its metabolically active coenzyme forms is complex (reviewed in[8]). On the other hand, FiA is an immediate precursor of 5,10-methylene-tetrahydrofolate, and oral administration of FiA bypasses the chemical reactions required for the coenzyme conversion of FA. Additionally, unlike FA, dietary FiA might be readily available to the brain (reviewed in[8])."

In other words, more easily used by the body and therefore more effective.

[M1tz1 in reply to park_bear]

Thank you so much park_bear. I hadn't heard of that.

[laglag]

Hi. I think it's a great idea. It may take awhile for some to complete and keep updated, but it would really help. One other thing that I look for is their geographical location.

[Kia17]

Thank you Trent.It’s a very good idea to share these info.

[grower]

Good idea and interesting read. In short I'm glad to see you still ski, I was an instructor back in the day and I guess the brain still remembers, I was visiting the US last year and had a few days at Mammoth and was really buoyed to find I could still carve those turns. Funny thing eh?

[RedwoodPark in reply to grower]

Yes, it is really surprising how well I can ski comparatively as well as walk in those clunky, heavy boots. I do get tired and feel my one-sidedness creeping in the afternoon of skiing. How funny that you mention Mammoth. We skied there last June 28th! And the snow was still decent from the top to the bottom. Skiing in short sleeves with my kids. Doesn't get any better and makes you realize that, even though we have this health situation, things can be worse and to try to enjoy and create meaningful experiences and live while you can. Even with or without PD, our bodies don't get any younger, so we might as well try to make the best of it!

[MehmetKutlu]

Thanks a lot Trent. I've learned from your experience. My questions are:

Was thiamine really beneficial to your disease course ?

And folinic acid ?

In your opinion, what helps most in relieving your dystonia ?

I also wonder whether lack of response to Mirapex precludes use of ropinirole and rasagiline. Many neurologists give them a try.

I am sorry to hear that you did not benefit from Restore Gold.

[RedwoodPark in reply to MehmetKutlu]

Thiamine for me hasn't been the cure we all long for, but I feel that it helps with fatigue the most. I feel like my condition is not getting better, but not getting worse, so that in and of itself seems to be worth it.

I am taking the folinic acid at the same time as my Thiamine injections, so there is no way for me to separate the two as far as which one is helping me more.

Dystonia is highly variable and unpredictable to me. The only pattern I notice, is that if I am sitting down too long, it appears more often. Also, stress can bring it on as well. I plan on exercising more in the near future and will let you know if it gets better. How about for your dystonia? Any words of wisdom?

I was hoping I would respond to Mirapex, but at the same time was worried about the side effects, even though I don't really have an addictive personality. Not sure about the other dopamine agonists.

It has been awhile since I took Restore Gold. I still have a few bottles left in fact. Thought about trying it again, now that I am taking Levadopa. Are you taking Restore Gold and had good results? I am curious.

[ddmagee1]

Thanks for sharing such a complete profile Redwood Park! In my earlier years, living with PD, I had similar ups and downs, and was able to do many things, albeit stiffness and effort at times. Fast forward a number of years, and it’s a lot different now. So, for each of us, at different stages, abilities and circumstances sometimes change. Enjoy what you can do now, while you can still do it! Perhaps you’ll be lucky and won’t have to endure much further progression. Keep on moving, is my philosophy. Sometimes, I feel like the tin man of OZ, stiff as a board! Sinemet helps, thank goodness for that! Wishing you the very best!

[RedwoodPark in reply to ddmagee1]

Yes, my friend calls me the tin man as a joke. I have thought about dressing up for Halloween just for the humor of it.

Like you say, as time goes by, our situation changes as well. That's why I thought it would be a good idea to utilize our profiles as a way to show our past and present history to each other and hopefully learn more from each other, based on what others have done and not done with themselves, so we can each gain insight into the choices we have in front of us. I believe that is the root of why most of us are here on this forum to begin with.

Take care!

[MehmetKutlu]

Thank you very much, for your comprehensive response. I love to compare - anything, including disease experiences. What I did realize is: yes, there are commonalities, but every person lives his / her course of PD quite differently, as different as human characters.

As regards thiamin and Restore Gold, I have been taking the former for nearly 8 months in twice weekly injections. Did it help ? Yes, it helped with my energy and bowel function, perhaps with the rigidity as well. Thank you, Dr Costantini.

I've been taking Restore Gold for 3 months, and I feel it has provided a more definitive benefit. Right hand tremor decreased, manual dexterity increased, and my hand writing became more legible. It may be expensive, but I researched each of its components thoroughly on the pubmed, and became convinced of their scientific merit. I intend to continue with RG, although it is hard to obtain in my country.

RG is not a scam. Still, there is a significant 18 % rate of little or no response; I don't know why. PD is a very heterogenous disease. Perhaps you might want to give your RG another try.

The components of RG have a good potential to protect against some other nasty diseases of inflammatory nature.

My conventional medications are: ropinirole 12 mg, which I find hard to tolerate sometimes, and amantadine 2x100 mg. I stopped taking rasagiline.

Neither thiamin, nor Restore Gold helped with my episodic neck and shoulder spasms, ie dystonia. They are actually much more disturbing than the classic PD symptoms. But I've been told that, these agents most probably decreased the severity and frequency of my dystonic attacks, I think this is true. Thiamin in particular, can have a prominent anti-dystonic action in some people.

I was diagnosed with PD last year. As usual, I had been having some of the symptoms for years before, not acknowledging what was really going on.

Since then, I have been frantically doing research on every supplement, trying to identify what could help. Here in Turkey, there are people who report near miraculous results with cranberry; I'll have a look at that. It would be best to try it for myself; as there is nothing on cranberry for PD on the pubmed. False hopes are bad.

Wish you all the best for you, and all good friends with PD. God bless you.

[RedwoodPark in reply to MehmetKutlu]

Cranberry....interesting! What have you heard about it?

[MehmetKutlu]

Some lay people, none of them college graduate, with advanced PD and having severe motor problems despite swallowing lots of pills every day, apparently experimented with many medicinal plants to see if there is benefit from any. One of them, an auto mechanic living in a relatively underdeveloped part of Turkey, discovered that cranberry substantially improved his situation with no side effects. This 47-year-old man, with juvenile PD onset at least 25 years ago, produced a paste from cranberry and regularly took it. After just 3 months, he was able to walk unassisted, and had other improvements in tremor and speech as well. His daily pill count decreased from 20 to 4. Two doctors verified the partial recovery.

Some others reported benefits. BUT: There is no formal study examining the utility of cranberry in PD in the medical literature. These are just anecdotes, not confirmed by any study. Let's hope they will be one day.

I've heard that there are health shops selling this paste, but unable to find yet. Nevertheless, I bought cranberry extracts in capsule form and started taking.

[RedwoodPark in reply to MehmetKutlu]

Interesting.... Do you know what species of cranberry it was?

[laglag in reply to MehmetKutlu]

Did the article mention dosage?

[MehmetKutlu]

I am trying to contact the mechanic.₺

[Erniediaz1018]

Outstanding Trent, thank you for sharing and suggestion.